Mal De Debarquement Forum

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Hi, I have been trying to help my mother who has Miniere;s Disease. She has just had a bout of it for about a week.
she is very depressed, and none of the local doctors have been any help. Up to this time, she would get a bad
episode, sometimes requiring a shot, and then it went away. This one was different. She has been feeling slightly
dizzy all the time. Every day she has a vertigo episode. She has been housebound, afraid to leave, not knowing
when it will hit. When she called her doctor (on Wednesday), he said, "Wait until Monday and see how it is". The
specialists he sends her to take hearing tests, and say well, there is really nothing that can be done. She cut out an
article telling about endolymphatic shunt, and labyrinthectomy, and vestibular neurectomy. I have been on the
internet for a long time now, trying to find a list of specialists that work with this kind of problem. I learned that I
am looking for an otologist or neuro-otologist. Where can I find a list for our area. Help! We live in Ephrata, PA.,
close to Lancaster, an hour away from Philadelphia and Harisburg, I can get to NY or Baltimore & Washington.
Would John Hoppikins be a place to start? We've already been to Hershey Medical Center. Any help would be
appreciated. Thanks
Cindi
USA - Saturday, October 18, 2003 at 10:28:04 (EDT)Spammers have started attacking the boards. They caused us to lose all comments before 2002 (if anyone has copy of the comments up until September, 2003, please let me know). It will likely be a neverending battle too - I have put in one little preventive fix to see if we can stop them.
Evan Torrie
Campbell, CA USA - Sunday, October 05, 2003 at 20:00:50 (EDT)ATTENTION: To those who are suffering from the rare syndrome, Mal de Debarquement, this site has been hijacked by pornographers. For help with your syndrome, please investigate other resources until this site is fixed.
bobbi
USA - Sunday, October 05, 2003 at 11:26:33 (EDT)ATTENTION: To all those with Mal de Debarquement Syndrome. This site has been hijacked by pornographers. Please try to find other resources until this site has been fixed.
Annie
USA - Tuesday, September 30, 2003 at 13:19:07 (EDT)I have been a memeber of this support group for over 2 years and just want to ask the person/people responsible for trashing our site to please stop. This is a very rare syndrome and we need to have a safe place to go for people seeking answers to their health issues. Thank you.
Marla Cruise
USA - Monday, September 29, 2003 at 20:44:49 (EDT)Hi I have had a sore throut for abou 2days I was wondering how to cure it with-out going to the Dr.? thanks
Bethany (bethany_20022001@yahoo.com)
Stilwell, ok USA - Sunday, March 10, 2002 at 21:00:02 (EST)Hi, I have been trying to help my mother who has Miniere;s Disease. She has just had a bout of it for about a week. she is very depressed, and none of the local doctors have been any help. Up to this time, she would get a bad episode, sometimes requiring a shot, and then it went away. This one was different. She has been feeling slightly dizzy all the time. Every day she has a vertigo episode. She has been housebound, afraid to leave, not knowing when it will hit. When she called her doctor (on Wednesday), he said, "Wait until Monday and see how it is". The specialists he sends her to take hearing tests, and say well, there is really nothing that can be done. She cut out an article telling about endolymphatic shunt, and labyrinthectomy, and vestibular neurectomy. I have been on the internet for a long time now, trying to find a list of specialists that work with this kind of problem. I learned that I am looking for an otologist or neuro-otologist. Where can I find a list for our area. Help! We live in Ephrata, PA., close to Lancaster, an hour away from Philadelphia and Harisburg, I can get to NY or Baltimore & Washington. Would John Hoppikins be a place to start? We've already been to Hershey Medical Center.
Any help would be appreciated. Thanks
barbara (balilley@yahoo.com)
Ephrata, PA USA - Sunday, March 10, 2002 at 12:44:34 (EST)My MDD started 10/20/01 after a 7 day cruise. I tried EVERYTHING! I had all the tests....Finally after falling so many times and feeling like I was one big bruise, out of desperation I went to see a balance specialist. I was put in bed with valium and tigan. That didn't work. I was switched to Librium and Tigan and bedrest. That slowed down the rocking, but my brain was so fuzzy I was unable to function. I found another MD who has a lot of patients with MDD. He started me on Elavil 10 mg at night. After 3 nights, the rocking stopped. I am now weaning off of the Librium and I am still not rocking.
This doctor explained that MDD is a neurologic problem and while the Elavil will control the symptoms, the MDD may not go away. I don't care. I feel like a human again. He also explained that once you have MDD, if you go back on another cruise, you have a high chance of it returning. Beware. Good luck all of you. My bruises are finally fading.
Nancy Gomez, RN, MSN
Nancy Gomez (dngomez@cox.net)
Lake Forest, CA USA - Sunday, March 10, 2002 at 02:29:39 (EST)Marilyn Kidson, if you are checking into this site, please write me.
TJ
TJ (P-TIVYE@prodigy.net)
Huntsille, AL USA - Wednesday, March 06, 2002 at 22:50:30 (EST)Hi everyone. Great reading your comments.Hang in there and take each day ata time. I found amytriptyline helped to relieve symptons but didn't necessarily cure the problem. I've recently had physiotherapy on my neck-a wonderful new neck-if ever I get M.D.D. again I'll try this. I do have one question. Has anyone had problems with general anaethestics? Could you let me know as I'm having surgery shortly.
Robyn Cox (coxes@eisa.net.au)
Melbourne, vi australia - Wednesday, March 06, 2002 at 17:18:28 (EST)I'm back! After writing that I was over MDD, two plus years after a cruise, I am now sad to say, "it's back". I had been sympton free for about a year, and came down with a major "cold" while in Phoenix. A Dr. friend got me Zithromax and it eventually did it's job, but... I'm rockin and rollin again! Then it occurred to me that my first episode started with a bad cold before the cruise, and I was still taking Zithromax when the ship sailed. So... could it be the Zithromax that triggered the return of MDD? At least this time I know that it can eventually go away,though the thought of another long session is depressing. Thanks for any input.
Barb Buchanan (BPB34482@aol.com)
Ocala, FL USA - Wednesday, March 06, 2002 at 10:11:48 (EST)TO ALL VISITORS TO THIS PAGE: Like TJ, I urge you to visit the following site to get your questions answered. >>mdd-list-request@etete.com<< Most of us MdDSer's only correspond with each other at the other site. If you prefer, you can just "look in" on what we are talking about without participating openly. I did for several months before I wrote in. Since joining the "mailing list" via this site almost three years ago, this is only my second time back HERE! Tens of your fellow rockers are waiting to help with your questions at the other site. Hope to see you there soon.
Judy (judymessen@prodigy.net)
Chapel Hill, NC USA - Monday, March 04, 2002 at 22:19:35 (EST)My wife reports the same symptoms that most of you have - swaying and moving up and down in her head at the same time. This started October 2000 after a cruise for 7 days. I would like for those of you who took a cruise to think about something ---- the sleeping arrangement on the ship. Did the bed you slept in move so that you could be away from your mate? Mine was mounted to the side of the ship parallel with the window. My wife moved her bed at a 90 degree angle to get away from my snoring. She slept across the ship - port to starboard and on her side. I slept fore and aft so that when the ship moved in the sea ( which was sometimes rough) I moved up and down and not side to side. Of course all of the doctors we have seen think that this is just circumstance - but they offer no real help either. What do you think? Also, have any of you contacted the cruise lines to see if they can offer any suggestions? It seems that this is a condition which is directly related to their industry from what I have read here and at other sites.
Don Schneider (schneid811@aol.com)
Houston, TX USA - Sunday, March 03, 2002 at 13:14:42 (EST)Wow, look at all these new people,
Join us at mdd-list-request@etete.com
It is a daily chat that goes to a whole group of MDDSers'
Lots of feed back, and support and a questionaire to feel out
Just go to the above address
and put "subscribe"
in the "subject" of the letter
And you will start getting all the latest news
I have had mdds for four years and have recently become symptom free
Read Marilyn Kidsons case history, this is what I believed helped me also..Elavil.
TJ
TJ (P-TIVEY@prodigy.net)
Huntsille, AL USA - Saturday, March 02, 2002 at 18:28:11 (EST)Okay, I found this site by accident, trying to find something to help with my condition. I had Phenmonia in Jan.1902, recovered from that alright. Then a few weeks later I come down with the Flu. Dr. said my system was low from the Phnemonia, that I hadn't had enough time to get my strenth back and when this Flu came along I got a really bad case of it. Then the dizziness started. So bad for awhile, I wanted to die. Doc. said the Flu had settled in the ear, causing ear irriation from an ear infection. I've been on Meclizine 25mg (sub. for Antivert 25mg.), and 2 different cough medicines, cahnged meds. I am now on Cipro 500mg. and Quaifenex PSE 120 (sub. for Entex PSE Tab. Ethe Ethex). My husband rented a walker for me the first week, it was so bad. Nothing has ever effected me like this. I've been out of work for three weeks now, and I hate this! Some days are worse than others. I need to get back to work, but since I'm a Sales Assocoate and work on my feet all day, I can't do it. I Lay down Or lay my head back,and feel like I'm going round & round in circles.I fell once, back against my dresser, which caused a bruse all across my back.I use a Cane for walking and balance. Along with my husband helping me out at times. I do have a history of Migraine Headaches. Any suggestions from anyone? Does this sound familiar to you all?
Ruby Rainey (rhjhrainey@sc.rr.com)
Columbia, SC USA - Sunday, February 24, 2002 at 10:49:08 (EST)I just stumbled onto this site while researching my "dizzy" problem. I've had recurring episodes for the past 6 years. Started with a house boat vacation in Cumberland and now it recurrs whenever I fly. Like most of you I have been through all the ENT tests and MRI/MRA test (which are all normal) I'm now seeing a neurologist who wants to send me to a physical therapists. Something called the Epley Manuever. Has anyone had any experience with this therapy. Any luck or advice you could pass on? Also does anyone feel worse after having a drink or two? Thanks for any info you can pass on. Jenny
Jenny (jwilliams@gmmec.com)
Bradford, Oh USA - Friday, February 22, 2002 at 13:57:19 (EST)I am now in my sixth week of rocking and rolling since returning from a trip to Florida. I first experienced this sensation about twenty years ago when my husband and I went on our first cruise. I had flown before and never had any problems and I have never been seasick nor had any other motion illnesses. Since that time, anytime I travel or go on long plane trips I come back with the sensation of rocking and rolling as though I were still aboard a ship. The only time I get any relief is when I am in a car. Being in a room with a lot of windows seems to aggravate the problem, also if it is windy outside the sensation is worse. The rocking lasts with me anywhere from three to ten weeks although in previous times I have had temporary relief from symptoms in the morning after a good night's sleep. This time I have not had any relief from the sensation at all and at times the rocking feels quite violent to the point of me feeling nauseous. I have been to neurologists and have had an MRI done and no abnormalities were found. It is very frustrating to have to go through this with no medical help. My family doctor had never heard of this syndrome until I printed out the website for her. I had no idea that anyone else suffered with this until I found this website and found out this had a name. I would appreciate any feedback anyone could give me. It is awful thinking you are all alone with this and that no one else understands what you are going through.
Lynne Selbst (sqdncrmn@pacbell.net)
Simi Valley, CA USA - Friday, February 22, 2002 at 12:29:21 (EST)Please check out this website for information on Mal De Debarquement Syndrome. You can post a comment/question, etc. and interact with others who are experiencing the same problem.
www.braintalk.org
T. (www.braintalk.org)
USA - Thursday, February 21, 2002 at 15:49:21 (EST)Please check out this website for information on Mal De Debarquement Syndrome. You can post a comment/question, etc. and interact with others who are experiencing the same problem.
www.braintalk.org
T.
USA - Thursday, February 21, 2002 at 15:48:26 (EST)Please check out this website for information on Mal De Debarquement Syndrome. You can post a comment/question, etc. and interact with others who are experiencing the same problem.
T.
USA - Thursday, February 21, 2002 at 15:48:13 (EST)Hey there you fellow "dizzies". I too have been suffering from "something" since 1987. It started when I woke up, lasted for a minute or two (violent whirling vertigo) and haven't had a severe episode since. But I have now graduated to a constant feeling of movement, not necessarily rocking but a definite movement at all times. I feel better in a moving car, but when I get to my destination, then the problem starts. Feels like my inner ear still thinks we are moving. Can't concentrate at work, use the telephone, use the computer, etc. I know I don't fit any particular category but MDDS seems to be the closest. I was leaning (no pun intended) toward certical vertigo since my neck is always sore and I found out I've got arthritis in C7 and a little bone spur. But I still think the underlying cause is the MDDS. I am going to try the chripractor this week or next and hoping it will be helpful. I am presently taking Klonopin (started today) and it seems to have settled things down a bit. I will keep you posted as to the chriro session! Good luck to all. Don't let this thing beat you!!!
Cathy (carrollce@hotmail.com)
Woodbridge, VA USA - Tuesday, February 19, 2002 at 20:49:54 (EST)Hello all -
I've been feeling the exact symptoms as described in this web site and Dr. Hains study. I was a little concerned because I thought the loss of equilibrium was related to a seizure I had about 3 years ago. I became focused on other possibilities like brain tumors, but my symptons weren't exactly like the symptoms that occur when someone has a tumor or any of the other 'normal' vertigo ailments that are studied in detail. I found this website and it is EXACTLY what I'm feeling. In a way I was relieved, but now I'm worried. I returned from a Las Vegas trip over a week ago, a quick 1.5 hour flight, and I still feel like I'm on a boat. I feel great when I drive or when I'm in the gym. I'm a budget/project planner for a large corporation and I need to be able to concentrate. I'm finding I can't do this. I'm 26 years old and relatively healthy. My husband and I were thinking of starting a family this year. Now I'm worried that if this continues it'll affect me being able to have a healthy pregnancy or be able to handle the stresses that come with parenthood. I'm very disapointed, but I'm trying to stay possitive. I have an appointment with my neurologist in a couple of days. I'm going to take all I've learned from you all to him. I'm hoping I can be cured with physical therapy. I don't want to start any drugs since I'd like to try to start a family. If anyone out there has any information on exercizes that will help, please e-mail them to me. I'd so be indebted. OH, and if there are any religious people out there, pray for me. I really want a healthy baby. :)
Val (valdezjv@att.net)
Albuquerque, NM USA - Friday, February 15, 2002 at 17:15:14 (EST)Hello all -
I've been feeling the exact symptoms as described in this web site and Dr. Hains study. I was a little concerned because I thought the loss of equilibrium was related to a seizure I had about 3 years ago. I became focused on other possibilities like brain tumors, but my symptons weren't exactly like the symptoms that occur when someone has a tumor or any of the other 'normal' vertigo ailments that are studied in detail. I found this website and it is EXACTLY what I'm feeling. In a way I was relieved, but now I'm worried. I returned from a Las Vegas trip over a week ago, a quick 1.5 hour flight, and I still feel like I'm on a boat. I feel great when I drive or when I'm in the gym. I'm a budget/project planner for a large corporation and I need to be able to concentrate. I'm finding I can't do this. I'm 26 years old and relatively healthy. My husband and I were thinking of starting a family this year. Now I'm worried that if this continues it'll affect me being able to have a healthy pregnancy or be able to handle the stresses that come with parenthood. I'm very disapointed, but I'm trying to stay possitive. I have an appointment with my neurologist in a couple of days. I'm going to take all I've learned from you all to him. I'm hoping I can be cured with physical therapy. I don't want to start any drugs since I'd like to try to start a family. If anyone out there has any information on exercizes that will help, please e-mail them to me. I'd so be indebted. OH, and if there are any religious people out there, pray for me. I really want a healthy baby. :)
Val (valdezjv@att.nete)
Albuquerque, NM USA - Friday, February 15, 2002 at 17:13:53 (EST)R ef Joes Comments
I Too Had a Hernia Operation Eversince I Have Suffered Vertigo
Jim
JIM (DANKOFingers@aol.com)
USA - Wednesday, February 13, 2002 at 06:21:10 (EST)I am so glad to have found this forum!! I went on a plane ride 1 month ago to Florida. The trip there wasnt so bad, the pressure built up but my ears never popped. It didnt effect me at all till the plane ride home. I thought it would go away, but after a week I couldnt take it anymore and went to see my doc. He said it was a ear infection and gave me antibiotics and some ear drops. It did not help, only ibuprofin gave me some temprorary relief. I went back and he said it was alergies and gave me allegra, needless to say, it did no good. He tells me it will pass but has no answers. I cannot go to work or leave the house, the dizzyness is so overpowering. It is the most dreadful feeling, I wonder some days if I can go on..... and its only been a month!! I dont know how you all have lived with this. I am 34 and never had any medical problems except for a hernia surgery 4 months ago. I had read that sometimes the anesthesia can bring about problems like this. I have another appt. with the doc and cant wait to bring alot of this info with me. I am worried about the long term effect of taking ibuprofin all the time, it cant be good from what i read, but it is the only thing that takes the pain away. Its only been a month, but I feel better knowing its not just me. You are all strong people, I wish you the best and a cure for the future. Thanks for letting me vent, Joe
Joe (cypcin@yahoo.com)
KS USA - Thursday, February 07, 2002 at 01:41:30 (EST)Just back from a short cruise to "test drive" the elctronic bracelet my doctor recommended. Forget it!!! I wasn't too bad on the trip. The bracelet-which gives you little electric shocks,and anti-vert pills did help. Also no alcoholic beverages. But, as only you guys will understand-I'm swaying now! It seems to be worsening, especially as I sit to read, write, or do computer. So disappointing. Good luck to the rest of you.
karen (pkmblecker@aol.com)
boca raton, fl USA - Tuesday, January 29, 2002 at 15:01:07 (EST)Hi everyone, I have had MDDS for three years now. I'm trying to locate a physician (ideally a specialist ) in Ontario, Canada who has experience in dealing with this condition and would be willing to see me. Any information in this regard would be greatly appreciated.
Bernie (bpac.desjardins@sympatico.ca)
Hanmer, On Canada - Wednesday, January 23, 2002 at 13:43:52 (EST)I'm now taking Klonopin .05 ml every other day. I cut a pill in half and my symptoms are all gone. QUESTION FOR ALL. I HAVEN'T BEEN BACK ON A PLANE SINCE MY PROBLEM GOT WORSE. SHOULD I TAKE MORE KLONOPIN BEFORE AND DURING MY TRIP? TAKE A HIGHER DOSE OF THE MEDICINE? PLEASE HELP ME?
Eddie Goldberger (Edbethtwins@attglobal.net)
G, MD USA - Monday, January 21, 2002 at 23:10:29 (EST)Hi all
I just discovered this wonderful site yesterday after wondering what has been wrong with me for the past 14 years or so and going through all the tests and final diagnoses of "well it must be psychosomatic" etc. I have had several bouts lasting months at a time since the age of 19. I'm currently having one that started during Easter 2001. It's getting better, but I have no doubt it'll be back. It is so good to read of other people's experiences and to know I am not alone, and not insane. Thank you Evan for creating this site, you are my hero!
I discovered a wonderful article on motion sickness that mentions MDD by Paul M. Gahlinger MD in Postgraduate Medicine. I guess many of you will already be aware of it, but in case not, here's the link.
http://www.postgradmed.com/issues/1999/10_01_99/gahlinger.htm
catherine taylor (catherine.taylor@yahoo.co.uk)
London, UK - Wednesday, January 16, 2002 at 06:41:56 (EST)I have just gotten rid of MDDS for the 4th time (lasted 2 months this time).
Traveled to Mexico in October - went snorkeling, boating - came home with MDDS again.
Knew that it would happen but like the water too much. Did physical therapy
right away but didn't get too crazed with it because I knew I was traveling again in a month.
Went to Hawaii and went sailing and snorkeling - even took a helicopter ride.
My 'rocking' actually went away after sailing for about a week. Then it returned but after a month
my symptoms(rocking,foggy brain) faded to nothing. I read that you should focus on the horizon when on the water and
not look at the 'waves'. Maybe getting 'back on the boat' is an answer for some.
Just thought I would throw that idea out to see if anyone else has had that experience.
I am just thankful it is gone - till next time.
Nan
Nan (puga@bewellnet.com)
kiowa, co USA - Friday, January 11, 2002 at 21:12:37 (EST) I'm reporting in after comments made over three years ago. I've now had MDDS for almost 3 and a half years, with no let up in symptoms. I've been on Klonopin, Valium, and now trying Ativan (all generic). I've been on combinations of drugs that haven't worked either. I never was able to go back to work because of the rocking/swaying. My husband and I work on how to spread the work about this blasted MDDS, about which so little is known.
PLEASE JOIN THE MDD-LIST SITE AND LET US HEAR FROM YOU!
Marilyn Josselyn (mjosselyn2@home.com)
Philadelphia, PA USA - Tuesday, January 08, 2002 at 17:22:24 (EST)I am interested in setting up a UK support group, with contact just by email initially, to share experiences and medical contacts in the UK
Any UK based sufferers please contact me by email at cathnorman@lineone.net
Catherine Norman (CathNorman@Lineone.net)
London, UK - Sunday, January 06, 2002 at 13:45:10 (EST)My doctor has recommended the electronic bracelet. Anyone had luck with this for the dizziness which follows a cruise. I have no problems with nausea,but the dizziness is awful and lasts for weeks. I've avoided cruising since my last experience, but now would really like to try again.
karen (pkmblecker@aol.com)
Boca Raton, fl USA - Sunday, December 02, 2001 at 15:53:55 (EST)Captain....You are not alone. I have the same symptoms as you. I thought I had something wrong also but I've had all the tests done and just got my diagnosis. I saw an oto-neurologist who said it was MDDS but that it was probably migraine related. So it's not life threatening, but it's very frustrating!
Heather (hfmailliard@yahoo.com)
USA - Saturday, December 01, 2001 at 22:40:41 (EST)I have just today been diagnosed with MDDS and thought I'd look it up on the internet. I wish I hadn't now, so many of you have had such awful experiences. I have had about four short bouts, always after boat trips and lasting about a week each time. The thought that these bouts could go on for as long as some of you have experienced is quite depressing. However, I will avoid sea and possibly air travel in future.
Good luck to you all.
Liz (liz@seller.co.uk)
Winchester, uk - Thursday, November 29, 2001 at 14:23:37 (EST)I am a merchant marine captain with a possible MDDS. I still live on my charter boat but fortunately I do not have to rely on an income derived from being a sea captain. It started last year around August and was triggered possibly by an ear infection. It lasted about six months. After that I was fine for nine months of diving and sea going and almost forgot the whole thing when it came back with full force after a diving trip to the Bahamas and some rough seas. I am waiting to take another series of tests. Last year it was all negative. My doctor tells me that it is MDDS. However I have my doubts since the symptomps of unsteadiness, dizziness, brain fog almost disapear when I sit down or lay down and bonine or dramamine seems to help contrary to what I have found about MDDS. Anyone else has the same symptomps?
Captain Z (jbzeb@aol.com)
Miami, FL USA - Tuesday, November 20, 2001 at 17:38:46 (EST)Gilligan's Island 2 hour Tour to Catalina in 1993 has me still rocking. Despite many medications, hypnosis, sea bands and accpuncture I am still floating.
Pat R
Snappy (mtnsnappy@netzero.net)
running springs, ca USA - Friday, November 16, 2001 at 20:34:56 (EST)I'm now off the Klonopin completely for the past 3 days. I feel fine and am crossing my fingers. I'll let you all know what happens.
Eddie Goldberger
Edward M Goldberger (Edbethtwins@home.com)
Gaithersburg, Ma USA - Friday, November 02, 2001 at 23:46:56 (EST)I am just writing to all fellow suffers to let you know of my experience and hope it helps in some way. This site has certainly helped me.
Up to August 1998 I travelled by boat, air etc (including America) from the UK with no problems. In August 1998 I suffered a strange case of double vision plus other strange visual problems and problems with my balance. This all came on suddenly gradually getting worse over 3 days. This started to get better and did so slowly for 3 months. However, I have never properly recovered and was off work for over a year, and my balance and eyesight never got back to normal, and I have just learnt to live with my problems.
In September 1999 I flew to America (9 hour flight) and within 2 days I was in a terrible state. My balance was all over the place and I was tilting and rocking to such an extent I found it an effort to do anything (even get out of bed), we ended up going home early. Fortunately I recovered from the flight problems completely within 3-4 weeks.
The second time I flew was in June 2000 to Tenerife (4) hours. I was okay until about a week after when I started noticing similar symptoms as before only not any where near as bad and I could cope with them. The symptoms were as before a feeling of falling forward and rocking which was worst when sitting down. Consequently I felt fine in the plane on the way home and when I was in the car. This episode lasted for 5 months and then went away, but still came back again very lightly occassionally, but mainly I was okay.
I started to look on the internet and found details of MDDS and thought that they fitted my symptoms but as this is so rare I thought I must be reading something into it and it was a coincidence.
We have just come back from a 2 week cruise which was very rough and reached force 9-11 gail for two days. After getting off at the first port 4 days later I felt top heavy again and swaying. Still everyone was a bit like that. However, it is now 10 days since we returned and I am still the same, very top heavy and swaying. On the third day back my whole body started moving and trembling. The Dr. has put me on valium as I was so stressed and in such a state as I knew this time straight away what it was MDDS. This seems to have helped and although I am still tilting when walking and swaying a bit the movement when still and lying down seems to have calmed down a bit (though not perfect by any means). I am not yet sure whether the stress was making it worse or the valium is working. I will keep you posted.
I have read various articles about cold sores. I have never had these in my life but I do suffer from virginal thrush. I am wondering if the whole thing started due to IVF which I had 9 months before the whole episode of my double vision and balance problems started. Has anyone else had IVF and sufferred MDDS? Anyway I know my problem with MDDS all started due to the original onset of balance problems. I had all the tests including MRI (nothing) but the only thing that has show up is antibodies in my lumber puncture. The only thing they have not ruled out is MS but so far I have not had any other signs of this., but I do definitely have neurological problems which has for me definitely set off the MDDS. Can anyone relate to this?
I would just like to thanky Tory for this web site it has been a great comfort as no one including my doctor has heard of this. Lets hope we all find out what is causing it and get a cure soon.
Carolyn from UK
Carolyn Marsden (countrygal_scm@aol.com)
Pontefract, UK - Monday, October 29, 2001 at 16:18:26 (EST)My 25 year old daughter is currently undergoing tests to discover what
her problem is. She has had dizziness & headaches for two months. The only
time the dizziness abates is when she is actually moving while a passenger
in an automobile. She had recently been on some airplane trips which
she got sick on, and had been sleeping on a waterbed for about a month or a
little more.
Is anyone aware of a connection with orthostatic hypotension. My daughter is being treated for this condition wherein her blood pressure
goes down and her pulse goes up when she stands up.
I am also wondering if any you have discovered any recent - in the last
year - articles in medical journals etc. on this condition.
Thanks, Audrey
Audrey (andrusae@cougar.netutah.net)
Spanish Fork, UT USA - Thursday, October 25, 2001 at 18:09:55 (EDT)Previous clip sounds desperate. True. I am on the verge of finding out what causes this and how to cure it. I hope it is not just "deal with it". After dr appts since june 2001, trust me i was not giving up. However, I was cut short by all the ridiculous doctors I allowed to investigate my problem. Today I got all of my records and am sending them to the House Ear Institute in Los Angeles. If this works for me I will post it. Today is Oct. 23, 2001. Wish me luck as i do you. Patty
PattyBuys (buyspatty@charter.net)
san luis obispo, ca USA - Wednesday, October 24, 2001 at 03:18:55 (EDT)I have had SUDDEN onset of motion sickness from around mid~June
Patty (alicebpot.charter.net)
San Lui Obispo, ca USA - Wednesday, October 24, 2001 at 03:07:18 (EDT)Isabel,
These helped me...
Otolaryngology
Cawthorne's Head Exercises
Http://www.entnorthwest.com/forpatients/cawthornes.htm
TJ (P-TIVEY@prodigy.net)
USA - Friday, October 19, 2001 at 23:40:39 (EDT)*****HELP WITH EXERCISES PLEASE*****
This is the second time I've suffered from MDD syndrome. Last time (back in 1997) I eventually recovered after doing vestibular rehabilitation exercises. These were sent to me by a fellow sufferer in the USA, since no-one here in the UK had heard of them. I no longer have the details of the exercises and now I'm suffering from MDD again. I would be enormously grateful if anyone out there has any information on exercises which they could send me. I know it's important to start them as quickly as possible after the onset of MDD, so please help if you can.
Many thanks.
Isabel Paterson (izzipaterson@aol.com)
Dunfermline, Scotland UK - Tuesday, October 16, 2001 at 12:34:06 (EDT)I have FMS(fibromyalgia). Didn't know I could add to my already terrible symptoms by going on a cruise. Found a physical therapist who is doing vestibular stress exercises with me. Says her helped another lady with similar MDD. She got better. I pray I will also. Mavis
Mavis Gehl (gehlm_1999@yahoo.com)
Fulda, MN USA - Saturday, October 13, 2001 at 11:50:43 (EDT)I was diagnosed with this in January after a 6 hour gambling cruise. My symptoms are a constant dizziness, lightheaded feeling, sometimes vomitting. However, I did not want to miss out on the things I enjoy. After vestibular therapy failed & the medicines failed I decided to take my own course of action. EXERCISE & LOTS OF IT !!! I started training to run a marathon. It was brutal at first but the more I ran the better I felt. I have never been a runner before, but this was a way to get control of my life back. I finished my first marathon last weekend and my symptoms are damn near gone and I feel the best I've ever felt. There is hope, I have lived the nightmare. Good Luck to all.
Eric Charles
Detroit, MI USA - Thursday, October 11, 2001 at 18:31:55 (EDT)It was my freshman year of high scholl. I had gotten my vaccinations, and
then I started to get very sick. I couldn't keep anything down, I was
throwing up every 5 minutes if not more and I was so dizzy I
couldn't stand with out someone holding me up.Of course my mom's first
thought was "you're making it all up, or your pregant. I knew niether
one was true. We went to the doctor's so many times i was on a first
name basis with all the staff.It was a military hospital so of course
they thought i was making it up too. they did'nt know what to tell me.
they sent me to specialists, and ran so many tests on me that i started
feeling like their lab rat. they did brain scans mri's and cat scans,
and even sent me to therepist, thinking it was a mental disorder. it
was close to thanksgiving of my Junior year before they sent me to an
ent. He immeditly knew what it was. He told me no SALT, which for a
teenager is horrible to walk away from. Then I started getting heart
flutters, whether that is related i don't know.My heart was about
twice as fast as normal when i was sitting still, so they said no
unnessisary strain on my heart,which meant no more mosh pit at the
punk rock concerts for me. they also told me no more caffinee, i hate
cokes anyways. The doctors put me an meclizine for the dizzines, and i was
already taking valuim for my TMJ. the antivert made me sleep all the time
and when i wasn't sleeping i had a hang over from the meds. My mom hated to
see me like that.I wasn't able to go to school for 4 months at the end of
my sophomore year. Junoir year started out ok, But then I got so sick that i
literally moved my bedroom into my bathroom. I didn't go to school at all
my junior year, i missed the prom and everything. close to the end of the
year i got the brilliant idea to completly turn away from mundane medicine.
I was riding in the car with my mom and we saw a herbal med. store, we
figured why not we've tried everyhting else the no salt diet wasn't
helping. we went in a the herbalist gave my two pills, one to controll my
blood sugur (hypoglocimmia is a common side effect), and another pill to
shrink my pituitary gland which in the words of my doc was grosly enlarged.
I started taking the pills and before the end of the week I was 110% better.
I even got to go to a theme park a ride the roller coasters, instead of
huvering near the bathroom or tashcans just in case. I'm 18 years old now
and i haven't had an episode in a while (knock on wood). It took the docs
three and a half years to tell me what was wrong and then they couldn't
tell me what to expcet with this problem. the herbalist knew it all.
Good luck to you all!!!! I know how you all feel.
Jennifer
Jennnifer Redmond (Pumpkin29445@yahoo.com)
Goose creek, sc USA - Thursday, October 11, 2001 at 11:35:17 (EDT)Hi Edward, I am one of the few that take Klonopin. After finally finding an ENT that understood MDDS I started taking it. I started with 0.25mgs three times a day then went to 0.5mgs three times a day. I have been on it for several years and it has enabled me to deal with the horrible wobbling, etc. Most people are concerned about it't addictive qualities but my doctor said as long as I did not increase it, it would not hurt me. Since you are going from more to less you are lucky. I can't promise that it is a cure and I still have bad days, (especially during pressure changes in the weather)but I don't know what I would do if I had to give it up because it gave me a new lease on life. I do hope it continues to help you as much as you say, I know I will keep taking it as long as I can. I have been taking it for several years now. I do wish you well and hope you stay free of the horrible rocking sensations. Please keep us posted. Take care, Ann
Ann
USA - Monday, October 08, 2001 at 12:28:13 (EDT)I started taking klonopin 4 weeks ago and my rocking sensation has dissapeared completely. My doctor started me on .5 mg in the am and .5 in the pm. I was on this dose for 2 weeks and then went down to .25/.25 for a week. Now I'm taking .25 at lunchtime and have not felt a symptom. Anyone try this approach? If so, has my rocking gone away or is it the medicine.
Edward M Goldberger (Edbethtwins@home.com)
Gaithersburg, MD USA - Sunday, October 07, 2001 at 22:44:43 (EDT)I keep coming back to this site hoping there will be some great new miraculous ideas! Unfortunately I don't have any. My physician (internal med)has heard of this syndrome & tells me I will just have to wait it out. At least I am grateful that he did not want to try "musical drugs" wih me. That would really have done me in. (My checkup & labs are all normal).
I have a history of low blood sugar & low blood pressure (not now I'm told); some dizziness in high school, nothing like this though. I'm rocking away since my 7 day cruise (I returned 9/6/01 from Alaska's Inside Passage). Symptoms same as I read here: rocking, rocking, tilting, swaying, some fullness/tinnitus in ears. Mild headache. What a trip.
I am currently trying acupuncture, yoga (helps sometimes), & have an appt. with a research scientist who left traditional medicine to study herbology - is that the right word? Going to keep a diary to try to notice patterns with this.
The balance rehab exercises I found on the web also help a little bit. Yes, I'm fine when I drive a car and also when I ride a horse!
I really want to hear from someone who has been helped by physical therapy! Please describe helpful exercises, etc.!!
Karen (louiea@earthlink.net)
San Diego, CA USA - Thursday, October 04, 2001 at 22:05:24 (EDT)Hello!
I am 37 years old. I am having dizziness,imbalance,mild tinnitus(Left Ear),& Floating Sensation for the past 6 years. Each year, my symptoms get worse. I am taking librium (Valium Category)(10mg) for the past 3 years. In 1996, dizziness started after having flu like symptoms. Then I was admitted in the hospital took all the tests MRI,MRA,ENG,Lumper puncture,MS,Rotary Chair, and so many blood tests. All of the test results were NORMAL. I took several medicines: Serc,Stugeron, Stemitil,Hismanal,Xanax ,Tegretol, prozac& Zoloft. None of them seems to control or stop my dizziness. Most of them really made me drowsy all the time. In 1998 , I saw 3 dizziness specialists who all suggested to see a neurosurgeon to have a surgery (ie) cutting the vestibular nerve on the affected side. This surgery may or may not cure 100%. So I did not go for it. I manage to live with librium but it does not help much. I went for vestibular rehabilitation but no luck. I would appreciate if any help or suggestion to improve my conditions. Please pray for me. Thank you all
Pad
R.Pad (ravi_1999_2000@yahoo.com)
Raleigh, NC USA - Tuesday, September 25, 2001 at 18:09:18 (EDT)Michael,
Labinthritis is what my GP believes my diagnosis to be,
and I do have low blood pressure. He has been real receptive
to the articles of Dr. Hain and Dr. Murphy and is treating me
with the medications used in their studies. I am currently taking
Elavil and Vioxx and I have had great improvement while on this
combination. Vioxx has raised my blood pressure to more the norm...
but my husband hates me being on it with all the scare about it
lately. Yet, I was to the point of being desperate when I started it.
I hope you find some help here.
TJ
TJ (P-TIVEY@prodigy.net)
Huntsville, AL USA - Saturday, September 08, 2001 at 17:36:01 (EDT)I just like to ask anyone who's suffering from LABRINTHITIS, if they also suffer from low blood pressure.
I've been suffering labrinthitis on and off for the last two or three years and know other people who also suffer but no one seems to have an explanation for it. Intuitively I feel that it could be something to do with low blood pressure.
Any information greatly appreciated - please leave messages on this board!
Michael
London, UK - Saturday, September 08, 2001 at 15:50:49 (EDT)I'm a newcommer to this board! I've been having vertigo attacks for the past 20 years. At first - they only lasted for several days. Within the several days, there were 3 or 4 vertigo episodes each lasting 10 to 20 minutes. Currently, my episodes are occurring every weel lasting from 20 to 40 minutes. I am seeing a ENT who specializes in vertigo. I just completed 4 month of vestidular rehabilitation at Lenox Hill Hospital in NYC.Not all physical therapists are trained in the practice. Typically the exercises consist of movements that initially make the vertigo worse and balance tasks that are quite difficult. By doing these repetitively, the balance system in the brain learns to function better. Common exercises include moving the eyes from side to side, rotating the head from side to side, rotating the head from side to side while walking down a corridor, and things like this.
THis therapy did not work. I had several ENG test done to measure the inner ear nerve. I was told that my left ear nerve was not working due to a prior illness or accident. I have been on all of the medications including water pills. There are no magic bullets. Surgery is an option but is not 100%.
tony
ny, ny USA - Wednesday, September 05, 2001 at 00:20:37 (EDT)Hi everyone!
To answer your questions about the blinders. Most of the time I just used my hands when I was getting dizzy in small spaces. At one time I did put some playing cards on each side of my glass's frames which gave the same effect. On the ferry, I just always made sure I had on my distance glasses and not the blended bifocals. I also avoided sitting on the side of the ferry where I could see water in my peripheral vision. When we played cards, ate, etc., I just insisted on sitting at a table in the center of the room far from the windows or I sat with my back to the water. When I wanted to view the boat ride, I did it looking straight ahead, usually at the front of the boat. Again, this is all based on my theories, but it seems to help me, and I can only hope it works for some of you. I know I was about to go mad after 5 months of MDD. I cannot imagine going years like many of you have written. Good luck.
Doug (trainfool@aol.com)
Colorado Springs, CO USA - Sunday, September 02, 2001 at 03:40:50 (EDT)I am so glad I found this site. It is good to know that I am not crazy that I really do have all the symptoms that all of you have described. I have had this for 10 years. Have never taken the medication because I don't like medicines. My ENT diagnosed me 3 years ago and I am thinking now of going back to try the medicine he prescribed, low dose valium. My symptoms seem to be aggrivated by stress and constant motion of driving, I drive alot, so when I drive i am ok, but when I stop the car I rock in my head all over again. Talking to people is wierd too, because the dizzy rocking feeling is so distracting!!!! I guess we will continue to cope.
S. Collins (sspalmblad@aol.com)
USA - Saturday, September 01, 2001 at 15:40:54 (EDT)I have had a few comments on the website...this I hope is the last. I can only hope....I ran into my chiropractor at an event and explained what was happening...He asked me to come see him. He said he wanted to eliminate any possibility of a neck injury. (I did have a fall before my boat ride...very very small deal and no one thought anything of it...chiropractor is still not sure there is any correlation) He did alot of therapy and I walked out a total new person. I do not know how to explain what I felt, other than I was not feeling the depression and disorientation in my head. I also did not feel the "swaying". Now I need to say that I then went on to my physical therapist who did some pretty strenuous tests and exercises...I continue to do them and will do so along with the chiropractor visits, but the physical therapy stuff made me dizzy...but it is a different dizzy than I was experiencing before. It is a funny sensation of not having total balance in certain circumstances, not an overwhelming feeling of someone having control over my body and making me sway and my head heavy. I hope I can come back to you all and say 100% for sure....but right now my bet is that this chiropractic visit has gotten me on my way out of this misery.
Kathy Covey (kathyc@bmacww.org)
Walla Walla, WA USA - Saturday, September 01, 2001 at 00:36:52 (EDT)I want to thank Doug for his e-mail and suggestion about the blinders. I definitely think that eyesite has something to do with this. I no longer enjoy looking at the water, and anything that shimmers and moves makes me dizzy. It's probably not a coincidence that this disorder affects people mostly over 40 - that's about the time most people have to switch to bi-focals or reading glasses for near vision. When I experienced my last major flare up with MDD, I was wearing contacts for distance and using reading glasses for near vision - a system that was not working well for me. In fact, I believe the aggravation of hunting for the reading glasses, taking them off and on, etc was just adding to the stress I was feeling and in turn making the rocking sensations worse. I finally switched to bi-focal contact lenses (my optometrist said that I was a perfect candidate for them given the shape of my cornea and the type of correction that I needed). Anyway, the first week I had them I did experience some disorientation but it cleared up quickly. The contacts have been a blessing. My dizziness did not entirely disappear but it did subside to a much lower level. There is no distortion of vision with the contacts like there is with glasses. I understand that not everyone can wear the contacts but they certainly helped me.
Laura
Laura (homesale1@aol.com)
USA - Thursday, August 30, 2001 at 11:05:31 (EDT)I have been involved with vestibular therapy for a week now...no such luck, however the doc said it would be 4 weeks before I would even notice a change. I am going to schedule an appointment with a neurologist soon just to get the ball rolling. I also have had advice from my chiropractor that I should check out any neck problem....I did have a fall preceeding all this.....I will do so tomorrow. After all that I think my course of treatment is going to be a neurologist, suggestion of hormonal therapy (which I hear so much about from all of you, and ruling out of anything else this might be. I HATE this feeling and I am not willing to live with it for as many years as I hear some of you have (not that I think I know how to do that....just that I am damn mad somebody doesn't know what to do). Thanks for being there everybody. I will keep you posted.
Kathy Covey (kathyc@bmacww.org)
Walla Walla, WA USA - Thursday, August 30, 2001 at 00:32:59 (EDT)Hello fellow rockers! I cannot believe that so many people are suffering from my same symptoms. Like many of you, my story began with a 3 day cruise back in 1995. When I got off the ship, my rocking never ended! Everyone told me it was "sealegs" and would go away after a week or so. After 4 months my ENT decided that inserting tubes in my ears to relieve a pressure imbalance may possibly help. About a week after the procedure the symptoms did begin to subside, though we now know it was just coincidental. Since then I have had 3 additional episodes. One that lasted 7 months which was brought on by a 2-hour whale watch cruise in New England. The next one was brought about by some amusement park rides I went on at Disney World. I decided that I would just keep my feet firmly planted on the ground and everything would be ok. Well, not so! At the beginning of this year I was under some major stress (death of a sibling, separating from husband of 22 hrs., plus my teenager getting in legal trouble, just to name a few!). At the end of February I had surgery. About 7 days after the surgery I began to feel the rocking begin. I was horrified! How could this be? I now know that stress can start up an attack. I have been through every test you all have had: MRI, ENG and on similar meds such as meclizine and dyazide, which did nothing. I have developed depression, was on Prozac for a while, now I'm on Wellbrutrin SR. My inability to concentrate is driving me crazy! My ENT has just ordered another MRI and ENG since it's been 5 years since the first set of tests. He's ruling out Multiple Sclerosis (which my sister has). I think he's wasting his time. I will print out all the info from this site about MDDS. He has not mentioned that this might be a condition he's looking for. Back in 1997 a doc at the Cleveland Clinic mentioned he though I could have this MDDS but told me no cure or treatment,so I didn't go back to him. Well I'm going on too long, but I just wanted to say that it is such a relief to know that others suffer from my symptoms - I thought I was going crazy! I look forward to any feedback. Thanks!
Regina (Sillasenhandzel@hotmail.com)
Cleveland, OH USA - Thursday, August 30, 2001 at 00:07:45 (EDT)Hi Doug, Ann B. and all, At the risk of repeating myself again and again, I am glad to read your ideas about the eyes having alot to do with this mess we all seem to have. My ENT did tell me that my brain was sending signals to my eyes and thence to my feet, so I feel you have got something there for sure. I do notice playing computer games can make me dizzy but I do get hooked every now and then. I agree that taking medicine is not the entire answer but I was so desperate I started on Klonopin. It helped so much I thought I had found the answer to my prayers. The problem is after taking it for so long, it ceases to help as much and I cannot take a larger dose. It is still better than falling on my face. I would truly love to find something and if blinkers will help, so be it. Does anyone know anyone who has a mule or horse?, Maybe we can rig something up. I know it's not funny but if I didn't laugh at myself once in a while I would go crazy. Anyway, thanks for the information. When I compare notes we do have something there that is similar if only we could find the answers. Thanks, everyone, AnnC.
Ann
USA - Tuesday, August 28, 2001 at 20:01:25 (EDT)Doug, I hope this is not a joke. If you could see me walking around wearing old glasses frames with index cards attached to to side, you would die laughing. Most everyone on this site would do anything to get rid of this everlasting boat ride. So, tell us exactly what you used for blinders, when you wore them, etc. This actually makes a little bit of sense to me as I have felt that this was somehow a mechanical rather than a chemical thing. And I am extremely reluctant to use chemicals to "cure" it since I have witnessed many severe reactions to all the wonderful new medications. Thanks, Ann B.
Ann B (annbrant@yahoo.com)
NC USA - Tuesday, August 28, 2001 at 17:51:02 (EDT)Hi,
I had MDD in 1997 for about 5 months. I acquired it after being on a houseboat on Lake Powell for 4 days. My symptoms were dizziness and feeling like I was still on the boat while on land. Driving in the car was my only relief. The more I stressed about it, because it did not go away, the worse it got. Then one day, it just disappeared. A later trip to WDW and the Living Seas building brought back the MDD for about one week! As many of you know, this is just a big aquarium. I then decided that perhaps all those tests on my inner ear that I had during my episode with MDD may not have been aimed at the right target. Has anyone considered that MDD may be caused because your eyes are seeing things move for a long period of time? Maybe it is the motion of the water, not the boat!? Then, when you get off and leave the water, your eyes and brain continue sending the wrong signals?
If you have similar symptoms to what I just described, especially if you find relief driving or riding in a car, please try this. While in a room that seems to be moving, put your hands to the side of your face or head and block your side vision, or put up sheets of paper to the side of your head. Use them like blinders. Does this relieve your sensation of the room moving? It is worth a try. This focuses your vision straight ahead, like tunnel vision. I used this method, plus got rid of my blended bifocals while traveling on the Alaska state ferry system for 5 days in 2001. In 1997, my doctor told me to never step foot on a boat again, but avoiding using my side vision seems to have allowed me to enjoy the Inside Passage with my family this summer. After the voyage, I did have some dizzy sensations on land in small areas like a bathroom or a small shop, but found the "Blinder" method to relieve that. I hope this works for some of you as I understand what you are going through. Good Luck!
Doug (Trainfool@aol.com)
Colorado Springs, CO USA - Sunday, August 26, 2001 at 03:02:43 (EDT)I just want to add that I've noticed many similarities between so many letters and my situation. I also experience migraine auras but without the headache pain. It really makes one think there must be a connection between this disorder and migraines. I have a very high stress job and that doesn't help. I love my job but I now feel like MDDS is like a stress barometer. I don't like the idea of taking medication, has anyone had any luck with accupuncture?
Laura
Laura (homesale1@aol.com)
USA - Saturday, August 25, 2001 at 12:00:30 (EDT)I have had so-called mdd for 18 months at this point. A 'Neurotologist' in Winnipeg recommended that I: 1. skating every day on either ice skates or roller blades (inline skates), 2. swimming, 3. standing on 9" cushions, 3 times a day for 10 minutes each time.
Please advise if you have had any success with any of these 3 exercises. Many thanks.
Colin -- coljoc@mts.net
colin young (coljoc@mts.net)
winnipeg, canada - Wednesday, August 22, 2001 at 12:58:22 (EDT)I've suffered from MDD since I took a Caribbean cruise in August, 99. Like most of you I was fine on the trip but couldn't get my land legs back.
I waited 6 weeks before seeing my doctor. He prescribed Antivert which did nothing except make me tired. He detected a heart murmur and an uneven pulse so he sent me to a cardiologist. After lots of tests the cardiologist put me on Toprol to slow my pulse and declared my heart about as fit as it's ever going to be without a valve repair. He did not feel that my heart problems have anything to do with the dizziness (which never abated)and sent me to an ENT. The ENT ran tests and diagnosed MDD. He prescribed scopolomine transderm patches and said that if I didn't get better that I could try rehabilitative exercises. The patches didn't seem
to do anything and I only wore them for about 2 weeks. Interestingly, my dizziness disappeared slowly within a month - I don't know if the patches helped or if it was just a coincidence. At that point, I had suffered with symptoms for about 4 months. I managed to stay symptom free for almost a year until a combination of things occurred.
My father was suffering from a terminal illness and so I began power walking as a way to deal with the stress. After walking a few days, I noticed some dizziness but it was faint and would leave quickly. Then after about 10 days of walking, MDD arrived full blown. The symptoms were really bad for about 3 months and then settled to a tolerable level although I'm not completely free of them. I've learned to avoid certain activities such as playing video games, or any activity that contains rapid, repetitive movements.
I have tried the patches again but they don't help. Lack of sleep or stress always make things worse.
The reason I'm writing, is most people report that walking makes them better and while I can walk at a normal rate, fast walking is a problem.
I would like to exercise but I have been afraid that it will make things worse. Driving is great - I feel normal when I drive.
Laura (homesale1)
FL USA - Thursday, August 16, 2001 at 12:54:27 (EDT)Hi to everyone! I have had my vestibular problem for the past 29 years. After an appendectomy I awoke with dizziness, swaying, etc, etc. I was sent home with no diagnosis. Over the next 20 years I saw numerous doctors to no avail. I was diagnosed with a vestibular injury 9 years ago, however I still have not had it explained to me in terms that I understand. Over the years I have had periods of relief, however, I have found that I have to be very careful in my day to day living as stress is my worst enemy. (of course I am a high stress person). Anyone want to talk? Thanks
Grace (reesgl@hotmail.com)
Kamloops, B.C., Canada - Saturday, August 11, 2001 at 11:32:51 (EDT)Hi to everyone! I have had my vestibular problem for the past 29 years. After an appendectomy I awoke with dizziness, swaying, etc, etc. I was sent home with no diagnosis. Over the next 20 years I saw numerous doctors to no avail. I was diagnosed with a vestibular injury 9 years ago, however I still have not had it explained to me in terms that I understand. Over the years I have had periods of relief, however, I have found that I have to be very careful in my day to day living as stress is my worst enemy. (of course I am a high stress person). Anyone want to talk? Thanks
Grace (reesgl@hotmail,com)
Kamloops, B.C., Canada - Saturday, August 11, 2001 at 11:31:36 (EDT)I have been "swaying" for about 40 days now. Went to the doctor following a long plane ride and a short boat trip, complaining of this dizziness. At first I thought I was just taking longer to get my "legs" back--- he prescribed Guifenesin and eventually (after my insistence that it was an infection in my ear....an antibiotic) That seemed to work for a few days and then it came back full blown! He referred me to an audiologist who did massive tests, determined nothing wrong with my ears and said that he felt I had this MDD....that will be what he reports to my doctor. Have had a MRI as well this week. I am sick and tired (literally on that one) of feeling "out of body" and swaying constantly...have trouble concentrating and while I have never been depressed or had any medical problems I am beginning to feel this getting to me mentally. I have contacted a local physical therapist who is trained in vestibular therapy...and he said he has heard of this syndrome. I will let you all know how this goes. What I am wondering is for folks who have had this many years: is it constant or does it come and go? For those who had it and now it is gone, how long have you been sway-free?
Kathy Covey (kathyc@bmacww.org)
Walla Walla, WA USA - Friday, August 10, 2001 at 19:21:53 (EDT)I have been suffering for a year now from what several Atlanta neurologists believe to be a vestibular disorder.
The closest any one can come to a diagnosis is "resembling incomplete MDDS" -- whatever that means.
I never experience any rocking sensations, but rather a heaviness throughout my body -- particularly the legs -- accompanied by a sense that my equilibrium has been thrown off to the point where I sense movement in space and have trouble doing simple, stationary things.
I can run, swim, play tennis, drive a car and walk with minimal symptoms. But, when I am symptomatic, little tasks like sorting mail, fixing lunch, folding laundry, playing guitar, wiping down a counter or making a bed become exhausting and very unsettling.
I have had stretches of up to two weeks where I experience little to no symptoms -- chiefly after I stopped vestibular rehabiliation and began enjoying life again. I don't know if it's coincidental, but shortly after returning for therapy -- this time in the form of elecrical stimulation of the inner ear ("E-Stem") -- my symtpoms resurfaced.
My doctor here in Atlanta suggested I contact Dr. Timothy Haine for further insights and perhaps a second opinion.
Does he have a web address at which I can reach him?
If any one has info. please pass it on to:
P7aul@aol.com
Thank you.
Paul (P7aul@aol.com)
USA - Tuesday, August 07, 2001 at 20:01:17 (EDT)I have had tinnitus in my left ear off and on for over 6 months and I have numbness on the left side of my face including my left eye, left tongue, left jaw and left forehead. I had some pain in my left upper jaw so I saw the dentist who said my teath where fine but refered me to an Oral Surgeon. Over the past week the symptoms have progressed so I went to see my GP because I couldn't get an earlier appointment with the Oral guy. My doctor said the dentist was wrong and I should see a Neurologist and get a CT done of the Trigenial Nerve. He thinks two possibilities are something pressing on the nerve or some kind of demyelination. Any suggestions?
Karl (themunzels@bigpond.com.au)
Canberra, AC Australia - Friday, August 03, 2001 at 06:57:12 (EDT)I have been having trouble with dizziness and a 50% hearing loss, and everyone kept misdiagnosing me and saying its all in my head.
Come to find out (finally) its vertigo and labrinthitis, The infection is also in the last ear bone.
is the hearing loss permanent? A specialist said its nerve damage. Maybe from this infection going on so long?
thanks
Carol (Hog517@cox-internet.com)
franklin, la USA - Friday, July 27, 2001 at 17:10:10 (EDT)Hi Nadia, I have tinnitus, which is a ringing in the ears. My only advice would be for you to see a good ENT, preferably one who specializes in balance problems. I hope it is only from the pressure change while flying. Good luck to you and let us know how you do. Ann C.
Ann C.
USA - Wednesday, July 25, 2001 at 18:31:45 (EDT)TO ALL NEW PEOPLE THAT RECENTLY POSTED>>>>>>
People do not check this area out very much...I suggest you join the e-mail list on this site, and then you will be in touch with a lot of people daily that can offer help and support....
You just need to subscribe and you will instantly get e-mails from people on this list discussing MDDS and other related feelings...GOOD LUCK
REDCAT
redcat (decafcat@hotmail.com)
USA - Wednesday, July 25, 2001 at 08:51:19 (EDT)After flying in to New York on a non-stop 5 hour flight from California, a few days later I have developed a loud hissing sound in my head (ears).
I awoke with it in the middle of the night. And for a week and half now I still have it. Every now and then it lets up for a few hours.
Some friends suggested that this is normal after flying in a plane.
But I have to wonder why it is lasting so long.
I would appreciate any comments or suggestions. My heartfelt thanks!
Nadia (Nadia@catskill.net)
USA - Tuesday, July 24, 2001 at 14:34:32 (EDT)Please see this string of messages. It's very interesting to read....
http://66.51.124.237/~revelation/ubb/Forum4/HTML/000133.html
Toni
CT USA - Saturday, July 21, 2001 at 15:12:07 (EDT)hang in there
colin young (coljoc@mts.net)
winnipeg, mb canada - Wednesday, July 18, 2001 at 11:59:26 (EDT)I found this site a few weeks ago and I can't begin to tell you how much it has meant to me! First, I would encourage everyone to continue to contribute to this site, particularly if you are a newcomer or have some new information to add. I have read everything on it! The beauty of it is that the comments stay here for future use. I also joined the list-serve (mdd-list@etete.com), and it is helpful to see the ongoing comments and the support there. I waited to add my story until I had followed some of your advice and visited with the doctor again.
My story is much like most. Went on 7-day cruise to Caribbean in Jan 2001 and I'm still on the boat rockin' & rollin', swinging & swaying, lurching, jerking, etc. I flew both ways & went on a submarine trip, & I think the pressure changes had a lot to do with this. I find that I have many things in common with you all; however, I'm older than most (65) and can't have very many hormones involved. I did work in a high school (teacher, then counselor) & I developed an allergy to the building. Retired last year. To travel - ha! I have had an ongoing sinus condition (rt. side only) for 4 yrs. now. Also have degenerated disks in my neck. Actually, I've always been an active, healthy person with an excellent sense of balance who always adapted to ships & boats well - never any seasickness. Appears I've adapted too well. Thought this would just go away. Went to the Dr. after 4 mo. & went through the usual routine. However, he knew what I was talking about! (I took Dr. Hain's printout just in case). He gave me the Cawthorne exercises, did the testing, & we're working on the allergies & sinuses now. I "extended" the exercises because they seemed too easy, & he approved. We agree to go the conservative route for now. No meds, but I have added ginger & ginko to my morning vitamin & supplements routine. I think they help!
I feel that I'm lucky since I seem to have a classic case without other complications, I don't have to go to work each day (I do care for my 91 yr.-old mother), and so far, I've avoided any depression. Plus, I'm very lucky to have such a good Dr.(in a small town, too). Would like to know if there are any success stories, what does travel do to you, & what about swimming?
This is too long! So I'll stop for now. Would love to hear from youall. (My e-mail will be different on the list serve -- it's a computer thing you know.) Best wishes! Ann B.
Ann B. (annbrant@yahoo.com)
NC USA - Thursday, June 21, 2001 at 21:31:32 (EDT)Well I'm back friends. Guess what? I just got the results of the MRI. Now how did I know they were going to be negative. Now the doc wants to send me to see (guess what) a neurologist. I don't think I want to go there. What do you folks think. I'm headed for a 10 day trip to New Mexico with some friends Saturday. I'm going and wearing the patches and having a great time. I'll worry about all of this later unless some of you have a suggestion for me. I still have 5 days before I leave.
Nancy (nanbedan@transport.com)
Bend, OR USA - Tuesday, June 12, 2001 at 22:15:20 (EDT)Hello to the Dizzy Clan. I just wish to post that I had the dizzy, nausea, loss of memory, blurry vision and all the rest of this crap before I ever went on a trip. From what I read, MDDS has to do with the return from a trip.I will post what is going on with me and maybe someone can help. I have been wearing hearing aids since the age of 30(now 60). I went to the family doctor and he recommended an Ear nose and throat specialist, or MRI, or a neurologist. I have been through the first two of these options awaiting the results of the MRI. I have autoimmune thyoiditis associated with my hypothyroidism. I've been on thyroid medications for many years. When the doctor came back with the blood test results that my thyroid was really off, I thanked God and figured that was what was causing the problem. No, it wasn't. Within the last several months my hearing has really gone to the bottom of the chart in both ears equally. The ENT specialist said I had labrinthitis and would be on medication forever.I'm on the scopolamine patches and can't be without them. I've been on them for 3-4 months. They seem to not work so good anymore. I have some bouts of dizzines with them on, but not intolerable. The meclizine and such does not work. My inner ears were progresively deteriorating.Now I have the shakes with this whole mess too. If the MRI results are negative, the doc wants to put me on valuim. I do not want to do this. Any suggestion or help would be greatly appreciated. I also learned some things from wearing the patches. Do not wash you hair with the patch on. The chemicals can get into your eyes and they will dilate. Also don't touch it without washing your right afterwards. I also found I was allergic to the adhesive in the patch. A suggestion was to get a sample of a nasal spray that has steriods and spray the area before attaching the patch. I've just started doing this and so far, so good. The patch will not work in any area other than behind the ear. Like all of you, I just want a solution to the problem, not bandaids. Feel free to e-mail me. I'd like to copy this whole website and give it to my doctor, but it is a little too large. Good luck to all of you for I feel what you do. Nancy nanbedan@teleport.com
Nancy (Nanbedan@teleport.com)
Bend, OR USA - Tuesday, June 12, 2001 at 15:16:05 (EDT)I take a lot of meds for Bi Polar...jumpy legs, vertigo, tingling and stinging sensations in my stomach and muscles around my lungs, blurry vision blurry, headaches on left side of head when I eat parmasiana cheese....migraines???? Side effects to name a few. The stinging and tingling sensations in my muscles around my stomach and lungs mystify me the most along with the left sided headaches. 44 and still not crazy in 5 years now, keeping the stress way down. Does anyone have any comments!!!
Thanks.
L Celentano (celentano@aol.com)
USA - Saturday, June 09, 2001 at 01:27:01 (EDT)further to my last comment i must amend the spelling - CIGUATERA- is the correct spelling look up on web site you will be amazed at symptoms
brad baxter (awardpl@ozemail.com.au)
sydney, australia - Monday, June 04, 2001 at 05:07:00 (EDT)M.D.D????????
I WAS DIAGNOSED WITH M.D.D AFTER ALL SORTS OF TESTS INC BRAIN SCANS
ETC I HAVE SUFFERED WITH THE WOBBLES NEARLY 4 YEARS.AS WELL AS OTHER
SYMPTOMS LIKE PINS AND NEEDLES THE LIST GOES ON. FINALLY WENT TO A DOCTOR WHO SAID HE DIDN'T THINK IT WAS MDD BUT SYMPTONS WERE SIMILAR I FINALLY WAS TOLD BY A FRIEND THAT I COULD HAVE CICAGUATERA POISONING WHICH YOU GET FROM EATING REEF FISH, SOUNDED BIZARRE BUT BEING AS DESPERATE AS I WAS I WAS WILLING TO BELIEVE ANYTHING. CICAGUATERA STAYS WITH YOU AS LONG AS YOU CONSUME ANY TYPE OF SEAFOOD AFTER CONTRACTING THE ORIGINAL TOXIN. GUESS WHAT! I STOPPED EATING ALL TYPES OF SEAFOOD AND ALL MY SYMPTOMS HAVE DISAPPEARED WHO KNOWS SOME OTHERS OF YOU MAY BE THE SAME AS ME. ITS WORTH A TRY. CONTACT ME ON MY E-MAIL IF I CAN BE OF ANY FURTHER ASSISTANCE TO ANYONE
REGARDS BRAD BAXTER
brad baxter (awardpl@ozemail.com.au)
sydney, australia - Sunday, June 03, 2001 at 03:53:09 (EDT)Joe Gibbens and Melissa
No one really checks the forums anymore here. It's best to subscribe yourself to the e-mail list to get your questions answered. There we share lots of stuff and you can tell us what you've been going through as well.
Just send an e-mail to mdd-list-request@etete.com (exactly as I typed it) and put the word subscribe in the subject line. You will start to get e-mails and it will seem that they are just random but that is b/c it is an ongoing dialogue through e-mail so just jump in and tell us your story.
Hope to see you there.
Toni
Toni
USA - Wednesday, May 30, 2001 at 14:34:30 (EDT)Joe Gibbens and Melissa
No one really checks the forums anymore here. It's best to subscribe yourself to the e-mail list to get your questions answered. There we share lots of stuff and you can tell us what you've been going through as well.
Just send an e-mail to mdd-list-request@etete.com (exactly as I typed it) and put the word subscribe in the subject line. You will start to get e-mails and it will seem that they are just random but that is b/c it is an ongoing dialogue through e-mail so just jump in and tell us your story.
Hope to see you there.
Toni
Toni
USA - Wednesday, May 30, 2001 at 14:34:22 (EDT)Hi all, I HAVE BEEN SUFFERING FROM DIZZYNESS AND VERTIGO FOR ABOUT 6 MONTHS. This condition came so fast I thought I was going stark raving mad, several doctors were baffled. Finally An Ear, Nose, and Throut specialist told me I Had Whats called Labrinthitis; something about tiny crystal like structures breaking off in my inner ear and floating about! Has anyone heard about this, after reading a few of the letter posted here I'm starting to think MDD is a possability. Please Help!!! Joe
Joe Gibbens (jgibben@comp.uark.edu)
Fayetteville, ar USA - Friday, May 25, 2001 at 05:28:14 (EDT)Hello there. After reading these comments I feel like I just met lost family members. Nobody knows how frustrating and dehabilitating MDD is until you try it! I have some questions: 1) how many of you got this affliction after a cruise to Bahamas and Caribbean? 2) what cruise line -- I heard that there were a lot of cases from Carnival cruises. 3) when did you get it? 4) does anyone have numbness in feet, even after dizzyness went away?
My case started in 1994 after a Carnival Cruise to Bahamas and Caribbean. I was sooo sick for a year -- feeling at high seas, constant nausea, unable to stand in lines, etc. Went to a bunch of doctors, who put me on meclizine, allergy stuff, cleaned my ears, etc. You all know the story -- including how if you talk about being dizzy, people act like your complaining about a paper cut.
I've found the following to be helpful: gingko biloba, spicy foods like jalepenos, and ginger. Sometimes, a plane trip works wonders -- or just living in a different locale. It was horrible in the Pacific Northwest, better in new york and italy. But it still kicks up sometimes...you know how this syndrome is. I hope all of you are hanging in there, i think it does fade with time; relapses have never been as severe or long as that first horrid year. Anyway, for those who got this on cruises, pls let me know: where, when and what line -- I'm looking for commonalities.
Best, melissa
Melissa (mlrossi5e@aol.com)
on the road, USA - Friday, May 18, 2001 at 02:12:14 (EDT)Toni
Sorry guess I was not looking hard enough on the brain talk page..it does have quite a bit of info on MDDS...You are right...sorry...Les
redcat (adlerleslie@hotmail.com)
USA - Wednesday, May 09, 2001 at 18:05:03 (EDT)Toni
I did see the MDDS thing on braintalk.org but there was not much there. I also tried to register with braintalk so that I could put info on there and ask questions but could not figure out how to do it...Can you...Redcat
redcat (adlerleslie@hotmail.com)
baltimore, USA - Tuesday, May 08, 2001 at 15:01:10 (EDT)There is a forum for Mal De Debarquement at the following website...
www.braintalk.org
Check it out.
Toni
CT USA - Monday, May 07, 2001 at 13:04:15 (EDT)This is a forum for Mal De Debarquement at the following website...
www.braintalk.org
Check it out.
Toni
CT USA - Monday, May 07, 2001 at 13:03:52 (EDT)Hello out there - I just found this website, thanks to my brother. I have not been diagnosed with anythink yet, but this sound like me. Now I know that I am not crazy. I am a 45 year old female. I have never been on a cruise, but have been on plenty of boats. I never got seasick until my daughter was born almost 6 years ago. I am a scubadiver, but haven't been on a trip for a year. I did take a plane trip in October, and my symptoms started slowly sometime after that. Beginning early November I was dizzy (for lack of a better word) constantly. I feel sometomes like gerbils are running around in my head. My balance is only minimally affected. I can get nauseaus when it is really bad. I am affected by weather changes and noise including my own voice. I am worse lying on my side rather than on my back. I am OK in the front seat of cars, but not so riding in the back. I have also notices that I am affected by the weather. I have cold spells. I thought that maybe this was related to hormones, but of course my OBGYN said no. I am not convinced. I have weird sensations like light pressure on parts of my head and face. It doesn't hurt, just very strange. I was exercising regularly, but running on a treadmill got too difficult. I switched to swimming, and will try to start back. (my husband bought a puppy, and she can't be left alone for long periods of time yet.) Exercise seems to help. Does any of this sound familiar to anyone? I would love some feedback so I can go back to my various doctors. I have had the MRI, EEG, spinal tap, various balance tests, ear tests, no diagnisis yet. I am being treated for migraine with no pain. It is constant, but ebbs and flows. Please contact me if this sounds like you. Cristy
Cristy (crispenny@aol.com)
Boise, Id USA - Wednesday, May 02, 2001 at 16:57:15 (EDT)HELLO,
IT'S LESLIE FROM MARYLAND HERE. I WAS WONDERING IF ANYONE ELSE HAS HAD SPONTANEOUS MDDS...OR I GUESS THE QUESTION IS..DID ANYONE NOT HAVE A CLUE WHEN THEY GOT THIS ILLNESS....I HAVE NO CLUE....SO SOMETIMES I WONDER IF THIS IS THE ENTIRETY OF WHAT I HAVE...JUST CURIOUS,,,HAVE A GREAT DAY...LESLIE/REDCAT
LESLIE (adlerleslie@hotmail.com)
baltimore, md USA - Thursday, April 26, 2001 at 13:31:57 (EDT)I have had inner ear problems for 14 years, including some brain fog, tinnitis, upper frequency hearing loss. I no longer have vertigo spells; they stopped long abo. However, lately I notice a body tremor, and some shaking in hands when I use them. Awhile back I was checked by a neurologist and endicriologist, and they found nothing.I wonder if this is related to the stress of inner ear dysfunction. HAs anyboy experienced this? Please email me at mooter@fuse.net. Thanks in advance!
John (mooter@fuse.net)
Cincinnati, OH USA - Monday, April 23, 2001 at 20:13:05 (EDT)Hi May, I haven't been able to get my e-mail sent so decided this was is the better way. I will be repeating myself to many but that's okay. Several on the forum have suggested we all take a printout of the MDDS pages to every doctor we visit. I have done that at the risk of insulting a few but most are very glad to get the information. I do take Klonopin because it is the only thing that helps me function. I do not recommend to anyone because it can be addictive. However, it has saved my sanity. I have been on the recommended dosage for several years and my ENT said it was okay to continue as long as I did not increase the dosage. I certainly don't want anyone to get addicted so I say this with caution. I am in my sixties now so I'm not as concerned as younger people should be. I do find using the computer for too long at a time bothers me and also changes in the atmospheric pressure really make me dizzier. I have had this for several years but was actually diagnosed with Menieres when in my 30's. Then in my 50,s I noticed a definite change in the dizziness, more of a balance problem.( a bad one) It is indeed a puzzlement. I wish you well and hope together all of us can find help.
Take care, Ann
Ann (fcriss@tsixroads.com)
USA - Monday, April 23, 2001 at 12:56:14 (EDT)HELLO LESLIE FROM BALTIMORE,,I FOUND THIS ON THE NET AND THOUGHT YOU MIGHT WANT TO TAKE A LOOK
" Meniere's Disease
--------------------------------------------------------------------------------
Meniereís disease is classified as an inner ear disorder that causes repeated attacks of dizziness and the discomfort of fullness from the affected ear. This is due to increase pressure of the inner ear fluids. Fluids in the inner ear chambers are constantly being produced and absorbed by the circulatory system. If there are any disturbances in the delicate relationship, the result is over production or under absorption of the fluids. This leads to increased fluid pressure that usually produces dizziness, which can be associated with fluctuating hearing loss and ringing in the ear. It is rare for someone to be affected in both ears at the same time.
Meniereís disease is characterized by severe attacks of dizziness that can vary from a few minutes to several hours or even days. Hearing loss and head noise usually accompany the attacks. The dizziness attacks can occur suddenly without any warning. Violent spinning, whirling and falling sensations with nausea are the most common symptoms. For some, a sensation of pressure in the ear is usually present. Sometimes if the pressure is severe, it can affect normal activities such as lack of concentration and short-term memory loss. These attacks may occur at irregular intervals. The individual can be free of symptoms for many years at a time."
I HOPE THIS HELPS
JERRY
jerry (jvancamp@his.com)
silver spring, md USA - Friday, April 20, 2001 at 13:17:14 (EDT)hello ann, this is my correct adress, please try it again, I look forward to hearing from fellow mdds patients.
may
may (tar13red@aol.com)
portland, or USA - Friday, April 20, 2001 at 13:14:30 (EDT)Hi May, I e-mailed you a note but it was returned. Is your e-mail address correct? If so it may be this computer. I'll try again if the address is correct. Ann
Ann
USA - Friday, April 20, 2001 at 12:43:41 (EDT)Hello everyone! I just wanted to know if anyone else out there feels "forgotten"? I know the pharmaceutical companies don`t feel that our "suffering" is worth the time and money to spend on research, but I`m sure everyone who has written on this website feels differently. There currently is no "on going" research regarding mdds, or at least none that I know of. Does anybody have any ideas to share on how to get mdds on the "medical maps". I know this may not be a life threatening disease, but it does take away the quality of life for so many. It is not "living" if you are constantly living in fear or hopelessness. I want my life back, but I cannot go back in time and constantly wonder what would have happened if I never went on that plane ride 7yrs ago. What I can do is start making some noise and hope someone thinks my message is important enough to listen to. If anyone has had similiar thoughts, e mail me with some ideas. Take care everybody.
May
may (tar13red@aol)
portland, or USA - Tuesday, April 17, 2001 at 00:07:07 (EDT)HELLO.
JUST FOUND THIS WEBSITE AFTER SPENDING THE PAST YEAR DESPERATE FOR AN ANSWER TO MY AILMENTS. I RECENTLY SAW A DIZZINESS SPECIALIST AT HOPKINS WHO THINKS I MAY HAVE MDD. I HAVE BEEN A MESS FOR 4 1/2 YEARS AND THE PAST YEAR HAS BEEN PURE HELL. I AM NOT CONVINCED I HAVE MDD BUT I AM WILLING TO THINK IT IS A POSSIBILITY. MY SYMPTOMS SEEM DIFFERENT. I HAVE NEVER BEEN ON A CRUISE, AND I NEVER REMEMBER FEELING ESPECIALLY DIZZY AFTER A FLIGHT. I JUST KNOW 4 YEARS AGO I STARTED BEING OFF BALANCE. IT HAS PROGRESSED TO A CONSTANT STATE OF DIZZINESS, EXHAUSTION, IMBALANCE AND FEELING LIKE I AM CONSTANTLY WALKING ON MARS OR SWAYING....WALKING IS HELL AND I SEE HERE THAT MANY PEOPLE FEEL BETTER IN MOTION...NOT ME BOY...I AM BEST WHEN I AM LAYING DOWN...SITTING CAN BE TOUGH IF THE SWAYING KICKS IN. THE WORST IS STANDING STILL......I HAVE NOSEBLEEDS, HEADACHES, EARACHES...SO ON OAND SO FORTH. I CAN BARELY WALK MOST OF THE TIME AND CURRENTLY MAY LOSE MY JOB DUE TO HEALTH ISSUES.....ISN'T THIS A BLAST....SO I WANTED TO SAY HI, TELL YOU MY STORY, AND SEE OF ANYONE HAS SIMILAR SYMPTOMS. I ALSO USED TO FAINT, BUT I HAVE PROGRESSED TO OTHER FUN TRICKS NOW. I HAVE BUZZING IN MY HEAD AND FELL LIKE SOMEONE IS PUSHING ME OR PULLING ME, I FALL ALOT...AND HAVE "DROP ATTACKS" TO THE FLOOR....HOW CUTE...DON'T YOU THINK....SO THIS IS ME....GLAD TO BE HERE AND HOPE THAT YOU ARE ALL FELLING WELL...REDCAT/LESLIE
Leslie (redcat) (adlerleslie@hotmail.com)
Baltimore, MD USA - Monday, April 16, 2001 at 15:02:09 (EDT)Hello everyone, just found this site as well and boy am I happy just to know I`m not the only one out there with this mdds. I`ve noticed that some people were wondering if this ever goes away, and I can say yes, it does. But It can also come back ( unfortunately ). I`m a 29 year old who`s "boat ride" started about 7 yrs ago after taking a plane, train, high rise elevator ride and greyhound bus ride. Yes, and this was all in a matter a couple of day`s. Well the highlight of everything was when I got off my plane ride in Hawaii and went straight to a traditonal LU-AU and threw up on the pu pu platters. Needless to say, none of the fellow tourists had an ALOHA spirit moment. So, I came back to Oregon and was constantly floating,swaying, foggy and stressed for about 2yrs, then one day, it was gone. After that, every once in a while if I were to go on an elevator, the sensation would come back for about a day, then go away. Well, this winter I got this nasty flu everyone has, and guess what, a free ticket back on the "boat ride". At first, I was just praying that it was flu related, because people who had it were complaining of being dizzy, but when it didn`t go away, I knew this "thing" had come back. Sucks huhn? Went to go see a dizziness specialist and found out that the last few years, ent`s and neurologists had misdiagnosed me with Labrinthitis, while I really had mdds. I`m at least happy to know what I finally have and that I`m not alone, eventhough I feel like it all the time. Ever get the feeling that nobdy really understands what your going through? Sure your friends and spouses may "feel bad for you" but they can`t truly understand what`s going on, or why I`ve been crying and so frustrated recently. I`m so depressed right now, it`s almost funny. I guess I just have to believe that if it went away once, it will go away again. And for those people who weren`t fortunate enough to even have a couple years of "boat free" like I`ve had,I hope you will know that feeling someday soon. As for me, I`ve made a full circle and here I am again. But at least this time I know there are others out there with me and the right diagnosis FINALLY!!! Anyone who feels like sending me any e mail, is more than welcome to, even some words of encouragement? Boy, I`m kinda pathetic right now... Good luck to all, if anyone needs to compare any symptons ( since I do have years of this) let me know. I wish you all at least one day of rocking free, maybe if we all think positive thoughts for each other, some good will come out of our suffering. Thanks again for letting me "air" out some feelings!
may (tar13red@aol)
portland, or USA - Sunday, April 15, 2001 at 14:35:19 (EDT)I went on a 4 day cruise a few weeks ago. After getting off of the ship, I continued to feel as if I were on the boat. The rocking has not subsided. I feel like I'm in a fog - like my head is always dreamy. I feel a bit like you do (or used to, in your younger days) when you're drunk and you're trying to concentrate on everything you say and to so you will appear sober. Unlike others, I feel worse when driving. I feel like the car is staying still but all of the surroundings are being pulled behind me. Same for walking, but less so. My right ear feels like it's plugged. I've been getting headaches, though I'm still not sure they're related. I'm having trouble remembering things. I do better (apparently unlike most others with this problem) when I sit still. Busy carpet patterns and stairs disorient me. I went to a general practicioner, who thought I might have a clogged eustachian tube. She prescribed Guaifed and said I would feel better in 2 days or so. I did not. I called my family physician and was referred to an ENT. The ENT immediately concluded that I have MDDS. He prescribed a diuretic and a low sodium diet. He also suggested that I go to a physical therapist who specializes in vestibular disorders - 2x per week for 2 months. I start that next week.
I did not intend to post (especially considering the short length of time I've had this and my assumption that I will be over it shortly), but noticed some commonalities that I couldn't help but mention. I had a sinus/upper respiratory infection the week before I got on the cruise. I had finished the antibiotic by the time I got on the boat and was feeling fine on that front. Also, I do take thyroid replacement hormones (part of my thyroid was removed). It sounds as if others on the site do as well. I've also been on fertility drugs for quite a while. Any sense that there is a hormonal component to this? I've noticed several folks indicating that their symptoms get worse at certain times in their cycle, and several folks have mentioned having thyroid problems of one sort or another.
Lucie Webb (lwebb@fulbright.com)
San Antonio, TX 78205 - Friday, March 30, 2001 at 14:21:07 (EST)I went on a 7 day cruise from Feb.11 - 18, 2001. I haven't been able to "get off the boat" since. I used the scopolamine patch while cruising to reduce the dizziness I was feeling. I was diagnosed as having MDDS this morning by an ENT specialist in my town. I am a surgical nurse and have had great difficulty trying to maintain my balance, concentration, and co-ordination. I am totally fatigued when I get home from work. Sometimes I have to crawl upstairs to go to bed at bedtime. I'll be starting a vestibular rehab course soon and will start taking low doses of valium when my symptoms are severe. I wonder if my problems started because of using the scopolamine patch since dizziness and equilibrium disturbances are listed as adverse reactions to the drug if used longer than 3 days. If anyone else got this way after using scopolamine please contact me.
Marla Cruise (Mcclogger@aol.com)
Dubuque, Ia USA - Tuesday, March 27, 2001 at 00:04:43 (EST) I am delighted that I actually can have information on my ailment, I hope it will help me feel better for future travel. I took a flight on Feb 24th and came back on March 3rd and I am still on (a boat) the swells are finally subsiding some. The whole week of vacation I was miserable and the next week after I could not even work. The third week was awful but small improvements toward the end of that week and the fourth week improved for two days thinking it was almost gone and now I am back to the deep symptoms of week three. Over a month and still not out of the woods. I have seen two otoneurologist and an audiologist and had an MRI and nothing conclusive except MDD which is what we came up with the other 3 times that I have had these sensations. I have had MDD from a 24 hour train trip, a fishing vacation (3-4 days intermittingly on a boat) and on a previous flight. I have a severe reaction to Valium, so I can not use that family of meds.
Do you have any suggestions of how to prevent this fun or what can be done to help after a trip? I am totally frustrated and do not want to hinder my husbands future travel. I am 40 years old and we live in NH with long winters, we want to get away ever Feb to warmer climate that means flight (husband gets winter depression). Please let me know any pointers you have or a book that I can obtain the most up-to-date information on this. I am very frustrated and feel like a hypocondrac (spelling?) when I talk about it to anyone including family. They do not understand how I feel and still want me to go out snowmobliling and riding in a car and even physical pleasure with a mate can be feared. I was told by the doctors the more I move the more I will prolong this and to stay as still as possible another doctor has told me to exercise and move as much as possible. Any pointers you can share with me?
Thank you,
Brenda
Brenda (bash@merriam-graves.com)
Claremont, NH USA - Monday, March 26, 2001 at 13:40:21 (EST)I have had the symptoms of MDDS since returning from a 7 day cruise on Jan. 8 2001. I have a rocking sensation all the time.Sometimes I have to hold on to walk. I am a 45 year old female. I have been to a GP, ENT, Chriropractor, and Neurologist. Tests: ENG, MRI both normal. I now am starting Vestibular Rehab. The PT suggested I research this disease since I had the symptoms. Medications don't seem to help. Ten years ago I had another mysterious illness to come on suddenly. I ran a low grade fever for a year and had dibilitating fatigue. Only explanation was CFS. I think I am prone to syndromes! I teach 4th grade, have three children 23,20 and 14, husband of 25 years and am active in church. I push to work even though I have disability insurance. When I first returned from the trip, I could not concentrate and my memory was poor. Asiles in Wal-Mart and walking the the mall bother me as well as loud background noise. I also feel cold sometimes. I want to think I am better than I was two 1/2 months ago, but I may just be learning to live with this annoying problem.
Jayne Anne (msja@apex.net)
Symsonia, KY USA - Friday, March 16, 2001 at 20:27:38 (EST)Well, I had the vestibular physical therapy session and she re-tested my balance after doing the exercises for the past 6 weeks. For example when I was first tested I couldn't stand on one leg for more than ~ 15 seconds or less, this time I could go for over 1 minute or more. She did a whole range of measurements for my balance in the beginning, and yesterday I measured at almost 100%. Unfortunately I still feel the rocking sensations, G-forces, etc. I think that the extra physical activity is the key and the head shaking exercises (she said to re-train the brain somehow)have given me the energy to fight back and be able to do the things that I enjoy doing. If anyone is interested I could send you the pages of information on the exercises. I have also seen information online. Good luck all!
Carla Strand (cmacstrand@juno.com)
USA - Thursday, March 15, 2001 at 00:02:53 (EST)After going on 7 day cruise in June, 2000 I am still experiencing symptoms of MDD, which seem to be getting more pronounced. I was wondering has anyone tried acupunture or hypnotism? I went through all of the tests, ENG and others. The "specialist" told me there was nothing that could be done. So I asked him if vestibual physical therapy has worked for MDD. After I had the initial evaluation, I will be starting next week. To Donna - I have hypothyroidism and have been taking meds for the last few years prior to the cruise. I also have been under a lot of stress. I haven't taken anything for depression. Good luck to everyone. Thank you for this site, or I would still be wondering what is wrong with me.
Carla (cmacstrand@juno.com)
USA - Friday, March 09, 2001 at 01:39:27 (EST)Hi Andrea and all, When I read your comments, Andrea, I realized we had another common link. I also have been diagnosed with Migraine although I only have the aura, no pain. My father had terrible headaches but at that time they called them sick headaches. I feel that they were probably Migrain but have no way of knowing. I keep finding common links and it makes me want to go into research. Unfortunately I am getting to old but I still keep reading. I hope the rest of you can find something to help you. I do take a medication which helps but most people do not want to take it because it is addictive. Good luck to all and take care, Ann
Ann
USA - Wednesday, February 21, 2001 at 08:07:09 (EST)Hi Everyone...
Just to let you know that I have been suffering with MDD for about a year now. It got so bad last year that I became agrophobic and could not leave my house. It was like these strange forces were pulling me up and down and from side to side. If a concentrated on objects they would seem to shift and spiral. I thought I was going mad. Because of my depression my GP prescibed me Flurexetine (Prozac). I have been a changed person eversince.
The drug stopped my panic attacks, made me more confident and due to being happier my MDD sumtoms aleviated. I no longer had the brain fog and could go back to working with computers.I am now about 70% cured. I still have dizzy spels but it is no way as bad. I hope other people can benifit from my foundings.
Please feel free to email me. It would be nice to speak to other sufferers.
Thanks,
Robs....
Rob (rob@toko.co.jp)
Windsor, England - Wednesday, February 21, 2001 at 08:06:59 (EST)Hi! My name is Sonja and I just find out your site. I have been suffering from a rocking, G-force sensations since April 1999. Like most of you, I feel better while I'm in motion. The vertigo feeling is worse while I'm sitting or lying down. I have done all the tests, audiogramme, EEG, ENG, Scan (head), blood tests...For the past 2 years, I couldn't enjoy beeing at a restaurant or cafe or bar or movies or home sitting down!!! Thanks to your site, I think I'm suffering from MDD. I'm travelling since April 99 every 2 months. At one point I was travelling every 2 weeks. It is within my job to travel. Canada to the US, to Europe, to South America... (My last trip to Peru and Columbia was terrible. When I came back, I had very deap sensations of roacking and I couldn't enjoy simple dinners with friends.. It was Christmas time! I had to hold myself to the tables or walls while sitting because I though I would fall down!)
Now, I have to find a treatment otherwise I will not be able to perform my job. Any solutions, anyone? Where should I start?
PS I have submitted this info (MDD) to my doctor (ORL, Neurologist) to see.
Sonja Berube (sberube@sprint-canada.com)
Montreal, QC Canada - Monday, February 19, 2001 at 13:30:17 (EST)Hi, I just found your site Tues. I have been dealing with this rocking-rolling-pulsating since 9-99. I have had every test MRI,MRA,CT, Etc. Nothing has shown but ruptured disc C6-7. I also do better driving, worse sitting or lying down. I came off a 7-day cruise, immediately boarded a plane home, have had these symptoms ever since. I feel like I need defibrallation of the cerebellum to bring it back in rhythm. I have learned to roll with the waves. I was wondering if anyone has a history of meningitis or hypothyroidism? Also, if anyones blood pressure went up when they started rocking? I had no prior bp problems. Thank God I found you.
Donna Hall (Rickhall@dialnet.net)
springfield, mo USA - Thursday, February 15, 2001 at 16:31:03 (EST)has anyone tried sitting on one of those vibrating massage chairs? it makes my symptoms go away temporarily.
Mya (mf21@cornell.edu)
Cambridge, MA USA - Thursday, February 15, 2001 at 13:12:56 (EST)Hi Ann,
Thanks for your comments. I am going on one month now with these symptoms. A few days ago it was so subtle, that I almost thought it was gone. Unfortunately, today it is back in full force. I have been reading up on the subject and noticed that quite a few people who have this syndrome suffer from depression. I guess I can count myself lucky that this has not ailed me; however, migraines definitely run in my family. Pressure changes bring about migraines, and this could be a cause...but who really knows. Thanks again for the comments.
Andrea
Andrea
Switzerland - Wednesday, February 14, 2001 at 05:58:18 (EST)Visit www.brainktalk.org
There is a forum for Mal De Debarquement...
Toni
USA - Monday, February 12, 2001 at 14:26:40 (EST)Hi Andrea, I have had MDDS for several years and am very much affected by changes in weather pressure, I can almost predict the weather. In fact, I have thought about getting a job at a weather station but know I would be laughed at. Just kidding, but it does affect me that badly. I have also had a problem with depression recently and have seen a very good doctor who has helped me tremendously. (I have read where there may be a connection with MDDS and depression). Now I believe it. Good luck to you and let us all know how you get along. (I would love to visit Switzerland) Take care, Ann
Ann Criss
USA - Monday, February 12, 2001 at 10:39:13 (EST)Hi there,
I am a 31 year old woman in pretty good shape with no current medical problems. Starting about 2 weeks ago I started having many of the symptoms described in this forum: Constant feeling of swaying which is worse when I lay down or sit, better if I am in a car or moving around. I feel like I am walking like a drunk, but I know I am not. I am tired, and irritable, but not nauseous...I am not stressed, not do I have any other medical conditions that could induce symptoms like this. I went to the doctor to have it checked out (there is a nasty case of the flu about right now). He check my blood sugar, iron (I have had low iron before) and for viruses. In addition he did test to check my blood pressure, lungs, appendix, ears, ear pressure, eye response, coordination - everything was fine. I told him the only time I have felt like this was after a plane ride (almost always, but only lasting 1 or 2 days). What I do not understand is that most people with MDDS have recently been on boat or plane rides. I have been on neither in the last 5 months. Is there something else that can bring this on (no, I do not sleep on a waterbed). The only thing I can think of is that in this area of Switzerland, we have extreme pressure changes due to weather. Right now trees are blooming because we have a weird warm spell (not normal for this time of the year). Many people around here get headaches, allergies or painful joints when the weather changes like this. Any answers?
Thanks-Andrea
andrea
switzerland - Friday, February 09, 2001 at 09:27:12 (EST)I was reading Nan's comment and was wondering what type of physical therapy people have done for MDD? I am suposed to start this soon at Johns Hopkins and I'm wondering if it really works. I have just been diagnosed with MDD but have experienced a rocking sensation for the past two years - all of the time. Medications have not really worked for me thus far.
Caroline (Evanharry@aol.com)
Washington, DC USA - Tuesday, February 06, 2001 at 15:47:29 (EST)GOOD NEWS! I have now been symptom free for a month after doing physical therapy
exercises for 2 months. This is my third round of MDD - probably not my last. I
just want to encourage everyone that it can be beaten. Physical therapy has
worked twice for me now. Good Luck everyone. Nan
Nan (puga@bewellnet.com)
Kiowa, CO USA - Thursday, February 01, 2001 at 20:07:52 (EST)Ive had MDD since June of 2000. I actually didn't know what it was until yesterday i was looking up things on inner ear infections. then i came across "MDD". all it said about it was that it is a weird kind of land sickness people get after a long flight or cruise, usually lasting months.
The way it happened was, in may, i went to japan. it was a long 13 or so hour flight. i was fine. while in japan, i was fine. every day i went somewhere by train or by bus. i spent hours on trains or busses. one day was nonstop train riding, trains going at 200+ mph. then, came the long 11 hour flight back. it was the worst flight ever. it started becoming unsteady. then, suddenly, the plane dropped. my heart jumped and raced, i thought it was the end. i held onto my seat desperately. for 15 minutes after the drop, it was EXTREMELY shaky, and then it became smoother. afterwards, every little jolt set off an anxiety attack for me. when i got off the plane, i noticed i still felt like i was walking on the plane. i told my mother this, and she said she felt the same, and that it would go away. my girlfriend came to see me that night and i said "my balance is a little bit off" and she said "i can tell." after a night of sleep it went away. i didnt think anything of it at first. however, 2 weeks later or so, after smoking marijuana, i had a huge panic attack, lasting like 6 hours. i thought i was having a heart attack and that i was dying. after that, i was afraid to move. the swaying came back full force. whenever i walk, it feels like the ground is moving up and down, like an elevator, and i have a sensation of falling. this really scared me at first. for about 3 months i was constantly worried. i was literally afraid to do everything. but then, things got better. i still feel the swaying and bouncing, moving floor when i walk, and i still have panic attacks sometimes, but its better. i saw a physician, neurologist, and had an MRI, it was all normal. i just pray to god and hope it will go away completely one day.
Rob (vtaker69@hotmail.com)
Boston, MA USA - Thursday, February 01, 2001 at 14:50:04 (EST)Has anyone ever tried the fairly new drug called Celexa? I would like to know how it worked for you. Thanks and take care everyone.--Lynn
Lynn (Follfam@aol.com)
Green Bay, Wi USA - Thursday, January 04, 2001 at 10:18:11 (EST)Hi Lisa, I am so happy that you had a great time on your cruise. I was thinking of you because the doctor who diagnosed my MDDS told me of one of his patients who happened to be wealthy so (he or she)just went on cruises most of the time to avoid the MDD symptoms. I suppose it is similar to feeling better when you are riding in a car. Anyway,I'm glad your trip was not spoiled and I sincerely hope you keep getting better. There is always hope isn't there. The best to you and Happy New Year. Ann
Ann Criss (fcriss@tsixroads.com)
Corinth , MS USA - Monday, January 01, 2001 at 20:15:31 (EST)My cruise was very interesting. For the first two days, we were sailing on very rough seas. Everyone else was stumbling all over the place and getting seasick. And although I boarded with my usual rocking symptoms, I was ABSOLUTELY FINE. I didnít even take my valium for two days! I was actually able to explain to my family what I was feeling for the past 2 years. They couldnít believe that Iíve been living my life constantly feeling like Iím on high seas. Actually, I recommend that a cruise on stormy seas for any healthcare professional who says ďI donít know what to do with youĒ so they can feel what itís like. This experience was incredible and I decided that if Iím going to live with MDD, I should get a job on a cruise ship. Once we got off the boat in Nassau, I didnít have sea legs or any residual rocking sensation even though other passengers did. About three hours later, the normal symptoms came back and I took a valium. But once I was back on the boat, the rocking of the ship seemed to remove my symptoms. Of course, I couldnít tell if I was feel the motion of the boat more than anyone else, but I really donít think so. Now, I am slightly symptomatic but NOT more so. Very curious indeed. Has anyone else experienced this type of alleviation of symptoms? So, I did wind up enjoying myself despite the dread I had as the trip approached. I hope everyone had a happy holiday season and letís hope this year finds us all a cure!
Lisa Stofko (lastofko@aol.com)
Yonkers, NY USA - Monday, January 01, 2001 at 13:13:01 (EST)Just recently I was informed by an ear,nose, and throat doctor that I had
MDD. I just went on my honeymoon a month ago and my husband and I took an
all day cruise and a couple of hours after departing the boat I had the
sensation that I was will sailing. Anyways, it's a month later and I am
still sailing. I went to my internist initially and she put me on a
medication similar to Dramamine that made me feel worse. Anyways, I am now
on Elavin and I feel a lot better. This actually happened to me four years
ago after a cruise and it lasted for a month and then disappeared. In the
future I think that I will have to avoid boats because I hate feeling
like I am swaying all of the time.
Joanne Ginsberg (jginsberg2001@yahoo.com)
Germantown, MD USA - Friday, December 22, 2000 at 14:29:31 (EST)Hi, I just wanted to tell everyone that I spent the last 2 years on 1 milligram of klonopin every night and I felt great! Now I am a week of being off of it and it wasn't easy getting to this point. I think the drug has been great, but I would caution anyone trying it to stay on a small dose. It is not easy to get off of this drug. Good luck to everyone and time will tell if I need to try klonopin again. Take care...Lynn
Lynn (Follfam@aol.com)
Green Bay, WI USA - Thursday, December 21, 2000 at 22:34:05 (EST)Does anyone know of a doctor in NY who is willing to treat an MDD patient? I used to work at NY Hospital-Cornell and saw 2 neurologists, an ENT, and an otologist. None could give me a diagnosis. The second neurologst referred me to the Vestibular Rehab Clinic at NYU where I was finally diagnosed by a physical therapist. She recommended an ENT at NYU who is now totally not interested in my case (How many times have you all heard "I don't know what to do with you"?). I left in tears. He referred me to Johns Hopkins but I would hate to go to Baltimore every time I need my Valium (2 mg 3x/day) refilled. I would like to try Klonopin but my ENT was reluctant to prescribe it this morning. (This guy is not happy that I've read more of the literature than he has). By the way, after two years of symptoms, I am reluctantly going on a cruise because I never told my family about what I'm going through and my uncle thought it would be a nice way to spend Christmas. I leave on Sunday and am dreading it!!!!! Wish me luck...and thanks for all of your input to this comments page. At least, I feel a little better emotionally knowing I'm not alone. Lisa
Lisa Stofko (lastofko@aol.com)
Yonkers, NY USA - Wednesday, December 20, 2000 at 16:49:23 (EST)I just received an email regarding my last post, asking what medicine I took to help get over mdd. I wish it was that easy. I did not take anything except my usual vitamins and ibuprophen. The latter put me in the hospital with bleeding ulcers. Had surgery, with complications that kept me there for a month with nothing by mouth except "limited" ice chips. Not a fun time. Somehow I doubt that was what cured me, but who knows about this strange affliction? Barb Buchanan
B arb Buchanan (bpb34482@aol.com)
Ocala, FL USA - Wednesday, December 20, 2000 at 14:44:46 (EST)Good News! I first posted in August 1999. Very typical case. 69 year old woman, 7 day cruise, etc. I asked that if anyone got over MDD to please come back and tell us. Well, I think I'm over it. I was so used to it, that it finally dawned on me, I'm walking straight, and don't feel dizzy! Since I posted, I have retired, moved to FL and survived a very bad session with bleeding ulcers with complications. Was in the hospital for 28 days. Unheard of in this day and age. But..... I'm not dizzy!!! I just shared this with my new MD in FL, and he said he had another patient with the same condition and was going to share my good news with her. May it give you comfort and hope too. Thanks to the people who responded to my original post. It helped tremendously to know that I was not alone, and that there was some chance of recovery. Thanks again, Evan, for hosting this site!!! Happy Holidays! Barb Buchanan
Barb Buchanan (bpb34482@aol.com)
Ocala, FL USA - Thursday, December 14, 2000 at 20:25:37 (EST)It has been a very long time since I have added a note. I saw a vestibular specialist this past week and was informed that I have endolympathic hydrops, MDD, and benign paroxymal positional nystagmus. All of these may lead to a diagnosis of Waardenburg's Syndrome. This syndrome is something one is born with, genetic in other words. I have some of the characteristics of this syndrome with a large birthmark on my skin, blue eyes, and one non-related item my father has Meinier"s Disease.
I have chronic swaying and rolling, ear pressure and fullness. The specialist thought that maybe some vestibular therapy might help my MDD symptoms. The only medication I am on is Lasix for the hydrops.
Arnold Bunting (buntinga@juno.com)
Oregon City, Or USA - Saturday, December 09, 2000 at 14:40:05 (EST)I started on Klonopin on Friday, and my balance is great!!! Good luck to the rest of you.
Regards,
Susan
Susan Belmore (susan.belmore@midata.com)
franklin, wi USA - Monday, December 04, 2000 at 15:51:26 (EST)I can't believe it. Chances are I have MDD based on a conversation and multiple testing like all of you have had. I can't even get into a specialist until August of next year. I have heard that 1 mg. Klonopin a day stops this madness. I hope that helps the rest of you. Do any of you know if your general practioner is willing to let you try this without even understanding MDD? My e-mail is susan.belmore@midata.com
Susan Belmore (susan.belmore@midata.com)
brown deer, wi USA - Thursday, November 30, 2000 at 16:20:55 (EST)I'm responding to Marla's problem (pain in one eye & temple). I have this problem on my right side. I saw a physical therapist who specialized in TMJ disorders (I have TMJ as well). She taught me some techniques for relieving the muscle constriction. By using these techniques, I've kept the symptoms under control for over six months. Unfortunately, I don't think I could describe them adequately. Also, cranial osteopathy was very good for symptom relief. You can find a D.O. (Doctor of Osteopathy) that does cranial therapy on this site: http://www.craniosacraltherapy.org/ (click the Practioner Referral button).
Laura (laura_iverson@yahoo.com)
Santa Clara, CA USA - Monday, November 20, 2000 at 14:15:41 (EST) Hi Rob, I have had this dreadful malady for several years and know how frustrating it can be. My suggestion for you would be to see an ENT who specializes in balance disorders, also make a copy of Dr. Hain's page with you. I have started taking a printout to every doctor I see. Some may look at you and say nothing but most will appreciate it. I saw a neurologist recently for another reason but took him the printout. He had just seen a patient with the same symptons as mine but didn't know what it was at the time. He was so very appreciative he was going to call his patient. I do not know the ending to this, but hope I helped even one person that day. Sometimes it just takes patience and a small miracle or two. I didn't mean to say so much but wanted to share this. I am on medication but most people don't take it as it can be addictive. I just hope you find a good and understanding doctor who will help you. Please don't despair, I know how hard it is but don't give up, Take care and God Bless. Ann
Ann C.
USA - Sunday, November 19, 2000 at 11:33:36 (EST)I have been symptoms free for over a year. I went to Cozumel and spent a
lot of time in the ocean snorkeling. Now my MDD is back. (talk about a sick
way to prolong your vacation feeling!). But I am doing the physical therapy
exercises again and I KNOW that I will win again. Already I have some days
that I don't even feel the rocking. Then other days that I feel like I am
still on the water. I just wanted to encorage you to not let it get you down.
Let's all just ROCK ON!!
Nan
Nan (puga@bewellnet.com)
CO USA - Saturday, November 18, 2000 at 00:12:30 (EST)I typen in the wrong e-mail address on my last letter. Here is the correct one. Apodaca_1@email.msn.com!
Kellie Apodaca (Apodaca_1@email.msn.com)
Westminster, CO USA - Friday, November 17, 2000 at 15:58:49 (EST)Hello everyone! I am a 29 yo female who has been suffering for 4 years now many symptoms described here in these letters. As with some of you I dont really know how mine got started. I read most of your letters and was very moved because I too suffer from dizzyness and imbalance visual disturbances, heavyness in the legs and arms, weakness, tingeling in the hands, feet, and head as well as bizarre headeaches and a feeling as if my head is being squeezed or very full. I have not yet been diagnosed with MDD but have been to an ENG, Neurologist, with no results but to find most all testing to come back within normal limits. I will be going to see an ENT in December. I just want to let you know that we are not alone in this battle for our lives. It is the Lord God who will make a way for us, who will give wisdom to those who ask and who will ultimately gives us peace during the worst attack. Finding peace in Him and through Him will drive out that fear of feeling so out of control with a situation you have absolutely no control over. God IS our ultimate healer! He blesses us with Doctors and they can be of great help however, they dont have all the answers, but I know who does!! The bible tells us in 2Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith. Also, in Isaiah 40:31 it says - Those who hope in the Lord shall renew their strength; they will soar on wings like eagles they will run and not grow weary and they will walk and not be faint! The Word of God tells us that we can do ALL things through Christ who strengthens us, not some things but all things! We together can take a stand against this horrible disease that the enemy has afflicted us with and begin to uplift, encourage and pray for one another! Should anybody out there reading this feel compelled to email me back to just talk and encourage one another or if anyone would just like some one to pray with them especially during those days that are so frustraing, fearful and terrorizing then please email me or you may phone me at 303.487.0070 my name is Kellie! May God bless you ALL!!
Kellie Apodaca (Apodaca_!@email.msn.com)
Westminster, CO USA - Friday, November 17, 2000 at 15:52:53 (EST)After going on 7 day cruise in June, I am still experiencing symptoms of MDD, which seem to be getting more pronounced. I was wondering has anyone tried acupunture? I went to a specialist at the UW Vertigo Clinic, and had to show him the scientific paper printed from this site by Dr. Hain. The specialist tried valuim in a very small dose, I felt no effect. I also tried not taking hormone replacement for about 3 weeks. I noticed that others have commented on having a thyroid problem, I am being treated for a low thyroid and take synthroid. Good luck to everyone. Thank you for this site, or I would still be wondering what is wrong with me.
C MacMillan (cmacstrand@juno.com)
Issaquah, WA USA - Friday, November 17, 2000 at 13:14:18 (EST)I need some help here guys...it is coming on 3 years since I started suffering from Vertigo/dizziness. I have had a CT scan, ENT, Neurologist, eye doctor....and a complete exam from my general Doctor. I am FRUSTRATED. I have done nothing about it for the last yr and have just dealt with the frustration. I need some help...anyone have an idea?...Should I see an allergist? Any help would be so appreciated.
rob_in_van_98@yahoo.com
Rob (rob_in_van_98@yahoo.com)
Surrey, BC Canada - Thursday, November 16, 2000 at 17:33:24 (EST)Oops - see below - I got my email address wron! It should be as per this comment. Perhaps my concentration is going too.........
Krys (krys@cybercritter.co.uk)
Southampton, England - Tuesday, November 14, 2000 at 14:33:33 (EST)Oops - see below - I got my email address wron! It should be as per this comment. Perhaps my concentration is going too.........
Krys (krys@cybercritter.co.uk)
Southampton, England - Tuesday, November 14, 2000 at 14:33:27 (EST)I began suffering vertigo - feeling I am swaying and about to fall over and tremors in my head - suddenly six weeks ago. The only change in my lifestyle that I can note is that I began travelling several times a day to and from my office on the 16th floor in an elevator. I have previously suffered from a continuing feeling that I am still on a rocking ship at sea, for several days after disembarking from a 33 hour sailing on a large ferry ship. My doctor doesn't have a clue. Have any of you guys out there suffered MDDS from riding in an elevator? It doesn't seem to be a major cause of this distressing condition, but it seems possible.
Krys (krys@critters.co.uk)
Southampton, England - Tuesday, November 14, 2000 at 14:25:56 (EST)Hello. I posted last May. I have been an MDDS sufferer for almost 3 years. I take 1mg of Klonopin a day. I have a question: when my prescription was winding down (pending a Dr. authorized refill) I cut my dosage in half. I noticed feeling strange...lightheadedness, muscle aches, and heightened MDDS symptoms. My question is, does anybody else have experience with klonopin withdrawal symptoms (it was mentioned in a recent post)...what are the consistencies? Any help would be appreciated. Thanks!
Tommy Gamard (gamard@yahoo.com)
New Orleans, LA USA - Friday, November 10, 2000 at 10:36:18 (EST)Hi everyone! This is my first time in the forum. I hope everyone is doing well. I have been experiencing my MDD symptoms for a couple of years now. I had two other shorter episodes after house boat trips without being diagnosed. My current episode has stemmed from a ferry ride to Alcatraz island. A short trip that has turned into a long ride with MDD. I was finally diagnosed. Too little too late it seems though. I wish I could sue my family doctor for not being able to diagnose me. If I had known I would have never got on a boat the last time. Have never really tried any drugs for my symptoms. I always seem to feel better when I am exercising regularly. I also seem to not notice my symptoms when I am engages in some sort of activity. Anybody else have a similar story? Oh, my father has Meniere's Disease. Talk to everyone again sometime.
Matt Shafer (teamshafer@yahoo.com)
Muncie, IN USA - Thursday, November 02, 2000 at 22:22:21 (EST)Hi everyone,I haven't been on in a year or so. I have been doing pretty good taking 1 mg. klonopin every night. Here is the problem-I want to try and get off the klonopin and I am having major withdrawl. I cut the dose on half and problems began. Anyone ever try and get off of this? I could use some advice. I may stay on it for much longer but has anyone ever heard of long-term effects? 1 milligram isn't much so I don't understand the problem of coming off. This drug has been a life-saver for me. I have felt much better on it the last 2 years. It really controlled the swaying. Take care everyone. Please e-mail with any advice.---Lynn
Lynn (Follfam@aol.com)
Green Bay, Wi USA - Wednesday, November 01, 2000 at 10:27:23 (EST)Sorry Sports Fans - I just noticed I hit the wrong key for the date of operation in prior msg. Correct date is [10-20-00] not [10-30-00] !!!
Gene Walsh
USA - Thursday, October 26, 2000 at 03:08:54 (EDT)My wife Helen was diagnosed as an MDD patient. Her symptoms primarily were nausea [but not throwing up] and not being able to watch ceiling fans, nor tolerate vehicle traffic coming toward us or crossing in front of us. This going on for over two years. Just last week [10-30-00] she had to have an angioplasty and came home next day. She has had no nausea since the operation which is giving her better blood flow to her heart.
Go figure !! Is she done with MDD symtons now - we'll see. Has some action taken place with the vagus nerve that communicates with the heart and stomach ?? Give some thought to having close exams with regard to heart activity and function and consider the vagus nerve. Good luck to all who have a diagnosis of MDD !! Gene Walsh [10-25-00].
Gene Walsh (genethefirst@yahoo.com)
Penn Valley, CA USA - Thursday, October 26, 2000 at 03:03:32 (EDT)Hi all, I have missed not talking to everyone and listening to what you have to say. I lost the sight for a while because my computer went down and I lost all of my records. I am back now and still rocking. This is going on 6 years. I wish that I could tell you that I had been cured but sorry :( no can do. I face every day as it comes and hope for the best.
Write to me if you want, I am always open to listen to anyone who just wants to talk.
Nancy Tapee
Nancy Tapee (NTapee@aol.com)
Santa Barbara, CA USA - Sunday, October 15, 2000 at 02:21:23 (EDT)Sorry, please write me at Marbar46 @ aol.com.
Thanks
Marla (Marbar46)
USA - Friday, October 13, 2000 at 21:34:11 (EDT)Is there anyone out there that has constant pain in one eye, along with pain in my right temple, with their MDD. I have had to wear a patch for a year now because my eye is so bothersome. I also feel dizzier when I look out of the eye that is in pain. I would appreciate if anyone would let me know if they have this symptom as well and if any medicine or herbs have worked. Thanks
Marla (marbar2@aol.com)
Chicago, USA - Friday, October 13, 2000 at 21:32:53 (EDT)I can't believe there are so many others out there like me. I took a trip in August to New Zealand and came back, like I am on rocking ship. I was somewhat relived to know that it wasn't something life ending, etc. I have had part of my thyroid removed and thought that might be it, but no. I was prescribed to take that patch behind the ears and it only made it much worse. I find it strange that when I am in a car or riding my horse I don't feel any of the symptoms. It sure has been depressing and I am driving my family crazy with this problem as well. I feel all I can do is pray. Thanks for everyone's input, sometimes there is comfort knowing that I am not the only one and that it has now lasted for two months.
s. hopple
monument, co USA - Thursday, September 28, 2000 at 10:10:30 (EDT)I have had MDD since December 1999 after a Caribbean cruise. I have been taking .25 of Lorazepam daily over the past six months. Since May, I have been taking Elavil (10mg). It has not removed the typical mdd symptoms but at least you gain a sense of wellbeing. Could anybody tell me if they have had any experiences with Elavil at any mg level? I feel that 10 mg is probably not sufficient to accomplish much. Would appreciate hearing from you.
It seems that everytime one goes in a car or even a small boat or swimming or on short plane trips, the symptoms become worse. According to Dr. Hain, one will never get rid of mdd unless they sit absolutely still until it disappears. This does not leave much in terms of lifestyle.
Does anybody ever get rid of this condition as I have never read any reports of people getting better. Maybe when they get rid of it, they don't tell us. Any comments? Thanks in advance. Colin.
Colin (coljoc@iname.com)
Winnipeg, Canada - Thursday, September 07, 2000 at 12:43:49 (EDT)www.braintalk.org
Toni
USA - Wednesday, September 06, 2000 at 17:39:12 (EDT)It has been awhile since I have entered a comment. This past year I have noticed a significant increae in my symptoms. In retrospect, following a visit to my doctor Dr. Franklin Coale, ENT, I realized that there was something a bit different about my MDD related problem.
I have had chronic motion of rocking and rolling all the time. I had a ECoG test done on 8/11/00 which confirmed that I have endolymphatic hydrops which is a form of Meniere's Disease. I am scheduled to have vestibular function testing done on 9/27/00 at Good Sam Hospital in Portland, Oregon. My history is that I started to have MDD type symptoms following a cruise in March of 1993. Following that I was diagnosed with probable MDD, with possible Hydrops as well. Recent events have confirmed the Hydrops. I just wanted to pass this on in case there is someone out there who may have a similar situation. My father has Menier's Disease as well although his symptoms were a bit different than mine. To you with MDD my suggestion is to walk as much as you can as this seemed to help what MDD symptoms I did have earlier in my course of this frustrating disorder. Hang in there and God bless all of you!
Arnold Bunting (buntinga@juno.com)
Oregon City, Or USA - Tuesday, August 22, 2000 at 00:13:47 (EDT)Hi Toni, I appreciate everyone.s interest in helping find hope and help for this pesky MDD. I did try to reach that web site but was told I did not have permission to enter. I am no expert on the computer, just trial and error and try again. I am interested in finding out every possible thing about MDD and I commend you for sharing, it should not bother anyone to have others help out as you are doing. After all this dear malady belongs to all of us, unfortunately. My family gets tired of hearing about my bad times so I try to keep quiet and find a friend who does understand. Take care and keep searching. Ann
Ann
USA - Monday, August 21, 2000 at 18:20:11 (EDT)I don't find the neurology web pages too busy!!! I think it is something that you just have to use once or twice before you get the hang of it unless you are someone who uses the internet a lot.
I work on a computer 8 hours a day so I am getting used to the additional fatigue or whatever it is that is causing this rocking sensation and adding to any unpleasant feelings I am currently having due to the boat trip. Of course, corresponding with others who are experiencing the same things relieves all of our questions and doubts about this malady.
The reason I like that forum better is b/c you can "post a topic" and then click on give me "e-mail notification" when someone replies. This will then notify you of any responses to your topic and put a link right in your e-mail. I think that's more effective than just replying back to everyone about something when they don't even know how the conversation got started. You can also choose to ignore the posts that others make if they don't pertain to you and it doesn't clog up your inbox.
I also think it's a much better way to reach people b/c no one seems to check the etete website anymore and we have had some newcomers there that don't realize that you all are just using the mdd-list. Since I had the Mal De Debarquement topic set up, more people have visited Evan's site and have been relieved to find others out there. There's no better way to get the word out as far as I can see, since a "LOT" of people currently use those neurology web pages.
Does anyone even use the Chat on the third Thursday of the Month either? It seems to me that you all just want to stay in your own little sheltered e-mail system.
Here's the address if you want to peek at it again. The other links I sent to all of you were just research I had done on my own on different search engines and has nothing to do with the neurology web pages.
If you know how to save this address you can "add it to your favorites" and never have to look it up again.
http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi?action=intro&category=3
Sorry if I've offended anyone but I was only trying to help and saw a way that we could reach many other people. I have too many other things to worry about and I guess I will just go elsewhere for support since no one, not even my family believes this disorder is real.
Good luck to all of you. =)
Toni
USA - Monday, August 21, 2000 at 11:20:37 (EDT)Finding the MDD Forum has been a God sent experience. I have suffered with MDD for 3 years (August 1997), after a site seeing boat ride in Alaska' s Preservation Bay where the sea became rough, and then, of course, followed with a long plane ride from Alaska to Atlanta. I have been to all the specialist from internal medicine, ENT, neurologist, and Cochlear specialist to vistubular specialist, etc. and even surgery where the left inner ear balancing system was injected with antibiotic, and steriods. I have had MRI, CAT scans, blood test, audio testing, the spinning chair test with electrodes and the cold ice water test into both ears. The final diagnosis MDD but nothing has worked to cure the symptoms. As I have read through the different case history it is amazing to me how much each of us give similar description. I guess what is so hard for me to deal with is that I look perfectly normal, no one I come in contact with at work or family would ever know that I have these symptoms and disabilities. Occasionally I will stumble and someone will catch me but that is not of any significant to them. I tried very hard to hide and not talk about this to my family because they see me as the strong energic one that is always up to a challenge and the entertainer of the group. However, for the past year, I have started to lose my desire to work and to entertain and do things with my family. I pay my daughter to clean my house because it almost impossible for perform the task. I know that sounds like depression and probably it is to some degree but I am completely aware of my feelings. I also have a full time job which requires me to travel by plane to 5 southern states and also other areas of the country periodically. I sit in staff meetings having a very hard time focusing and concentrating on the topics of discussion. I find it is getting harder and harder to stay focus and complete task. I don't want to give up my job of 14 year seniority.. I am 57 going on 58.. I am still active and relate to my younger piers and receive high praise and respect from them. They look to me as their mentor. What I am saying I enjoy my work and my co workers, and hopefully if we can get the word out to the medical field.. there can be more research in this area. I would be interested in getting more information from the gentleman who feels neurosurgeons may have a better feel for what is going on.
C Tallent, Roswell, GA
C Tallent (tallentc@bellsouth.net)
Roswell, GA USA - Saturday, August 19, 2000 at 18:10:33 (EDT)g'day to all you dizzy folk, nice to see I'm not alone with some mystery illness, I thought maybe because I was down under that I had the wobbles.
It started 2 years ago after a 7 day fishing trip 200 miles out to sea beyond the barrier reef, caught heaps of fish, drank lots of beer but was left with the dreaded wobbles. I have visited a specialist at The Balance Disorders Clinic here in Sydney who diagnosed MDD and suggested there is nothing that can be done but was very interested in getting a seat on our next fishing trip!!! I suffer from a few pins and needles in the arms. I find I can go to sleep anytime, day or night, no medication has been suggested, I just put up with it.
One thing that I wonder about however is the constant use of Mobile phones, In my business I am constantly on the mobile phone, does anyone out there think of the possibility of radiation overload?? just a thought
BRAD BAXTER (awardpl@ozemail.com.au)
sydney, Australia - Wednesday, August 09, 2000 at 05:00:58 (EDT)Got the new forum started on the Neurology Web Pages....
Topic is MDD Mal De Debarquement. If you have trouble getting to the following address just type in up to the ultimate.cgi and leave out the rest.
http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi?action=intro&category=3&BypassCookie=true
Hope I'm not stepping on anyone's toes. I just want to get the word out so Doctor's become more aware of this problem.
Thanks.
Toni
USA - Monday, August 07, 2000 at 15:28:50 (EDT)Just wanted to let everyone know. It has been two weeks and I still feel like I'm "on the boat". There is another webforum that I go to frequently. It is called the Neurology Web Forums and they have subjects from A-Z. I recently wrote them a note asking them to create a new subject for MDD and the forum administrator wanted to know if we wanted to GET THE WORD OUT. Do We?
When I signed up in January, there were about 2000 users, now it has grown to 18,000 and growing everyday. Check out the website. If you click on the link below it will bring you to the general information page. You can click on Forum Feedback and do a search from Tranquil. There you can post a reply to the message about adding a new topic for MDD. Let's help spread the word. Thanks and good luck to all of you.
http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi
Toni
USA - Monday, August 07, 2000 at 13:15:44 (EDT)For those of you reading the forum frequently, we have an MDD support group that is an on-line list serve. Your message goes to everyone in the group and people respond, etc. Since joining the list serve, I don't visit the forum page much, and I feel the others on the forum don't visit as often either. To join, go to the MDD webpage and look at the bottom about MDD support, and it will tell you how to join. The group is much more interactive and has been a life-saver for so many of us.
Tisha
SC USA - Saturday, August 05, 2000 at 21:49:57 (EDT)This could be caused by a compression of one of the cranial nerves by an artery. If the 7th cranial nerve is compressed, hemifacial spasm results. If the 5th cranial nerve is compressed, trigenial neuralgia results. If the vestibular nerve is compressed, MDD may result. Look for a neurosurgion (not a neurologist, as they would rather treat with drugs than with surgery) who is familiar with microvascular decompression surgery. What they do is go in and get the offending vessel off the nerve and pad it with a shredded felt teflod pad. I, as well as many others in my support group for sufferers of hemifacial spasm, have had the microvascular decompression surgery. We are now spasm free. As I said, the best thing to do is consult a neurosurgeon who has a lot of experience in microvascular decompression surgery. The one who perfected the procedure still does many of these surgeries every week. His name is Dr. Peter Jannetta. In fact, the surgery used to be called the Jannetta procedure. For more information about how to reach him at the University of Pittsburg Dept of Neurosurgery, use your internet search engine using "hemifacial spasm" or microvascular decompression surgery, and look for Circle of Friends. That is the name of the support group, and their web site has a wealth of information on this surgery.
Colleen Morse (colleenmorse@yahoo.com)
Mounds View, MN USA - Friday, August 04, 2000 at 12:47:43 (EDT)Hi all. This weekend will mark the l year date for my mdd run. I, like many of you have been to all the doctors, specialists and rehab training. Nothing so far has been successful for a l00% recovery. Having said that, I will say that after 8 months of vestibular physical therapy I am about 70% improved. I still have the lite rocking 24/7 as well as certain moments of dizziness (always worse at nite) But the big improvement has been that I no longer have the "brain fog". I can concentrate again and I have the ability to focus on certain thoughts and objects with not near as much difficulty. I still wonder about all this though?? My case is pretty much similar to so many of you. Went out on a boat in Vancouver for only six hours, got off and this whole nightmare began. I wonder how many mdd sufferers have a thyroid condition? and if there is a direct link to the thyroid? I have a thyroid condition. I take my daily medication, no big deal, have for years. Any thoughts on this would be appreciated. While I highly recommend the vest. rehab. who really knows if it actually helps or if your particular session with mdd was lifting anyway?? I certainly can relate to all of the horrible days where living with this initially day after day then week after week and then of course month after month and year after year can be so devastating. But there must be a cure for this crazy middle ear imbalace, after all it is the year 2000. If anyone has any questions for me I'm more that pleased to answer. As I said, I too, have tried all the drugs and doctors around the world.
Maureen
Maureen (wparrish@home.com)
Toronto, Canada - Thursday, August 03, 2000 at 14:36:03 (EDT)I can't believe there are people with symptoms similar to mine. I have heaviness in my head (left sided), pressure in my head, tingling in my head, hands and feet. My body feels heavy when I walk. When my symtoms are bad, I get very sleepy. I also feel like my head is vibrating and I feel motion in my head. Often I lose concentration. Do these symptoms sound like MDD? I have had this condition since I took a cruise in 1992. However, my symtoms have continued to get worse -they occur daily. I have taken Paxil and Zoloft which made me sicker. I tried Neurontin which helped for a few months and then was not effective. I am on Klonopin and it helped for awhile and is not helping anymore. I have had many tests and they are always O.K. Any suggestions from anyone. Does anyone have alot of tingling in the hands and feet and vibrations in their heads?
Betty (BettySueK@aol.com)
Miami, Fl USA - Wednesday, August 02, 2000 at 23:13:49 (EDT)A physical therapist told me about MDD (2000). Your Forum symptoms and descriptions are much like mine. In 1996 we flew to Scandinavia for a tour, traveled by tour bus, boats, and on trains. Two nights before our flight home an overnight cruise from Oslo to Copenhagen made it through high winds and high waves. We didn't get seasick and slept a bit through it all. Within two days of arriving home I felt as if I was still on a boat. My doctor checked me out, sent me to an ENT (every test imaginable), sent me to a neurologist (tests, and meds for nausea), and finally to a psychologist. Nearly a year after it started my husband and I drove for a couple of weeks to sightsee in the USA. My neck got stiff toward the end of that trip and after we arrived home the motion problems stopped! Start June 1996; finish June 1997. Three years later (about May 10, 2000) here it is again, with no clear reason for it to start. No special trips, no nausea. Now lots of ups and downs, and occasionally there is heavy pressure inside the rear half of my skull. All of this causes discomfort, distraction, and depression at times. Inner activity varies. Stress or too much physical activity seems to increase it. I've walked 2 1/2 miles a day for several days in a row with no problems. But after 15 minutes of tennis with my husband the court bobbed up and down. Something that happened which confounds me is that during my grandson's concert, sitting in the stands with a lot of other people, enjoying the children and their music totally, I suddenly knew that I had to leave - total internal discomfort. When we got home I sat and waited for my system to slow down. Why did that happen? During the three years that were clear we have driven hundreds of miles, been on ferries, and I even did a tandem parachute jump two years ago - no problems. Tomorrow (now with MDD) I'm jumping again to celebrate my fast-approaching 65th birthday. or cure? The first time around I blamed it on my neck. I've had chiropractic this time (no help), neck artery ultrasound tests very recently (okay). Health conditions: allergic reaction to niacin, sulfa , alfalfa and newly cut grass/ lactose intolerance/ take 75mcg thyroid daily/ take 2.5mg Bromocryptine 2x daily (previous pituitary tumor). Is there any more progress on discovering what causes this condition? How do we alert doctors as a group? I'm giving my doctor and neurologist a copy of a few pages from your information site (7-15-00) - re Dr.Hain and Current Knowledge. Here's to a solution soon! I can be reached through my daughter Barb.
Carol Goodrich (BarbDow@iName.com)
Edmonds, WA USA - Tuesday, August 01, 2000 at 16:52:17 (EDT)I went boating four days ago and am still feeling the effects of the boat ride. The boat ride was only a total of 4 hours, since then I have been experiencing all of the symptoms described for MDD. Most of the people here have been on 6 or 7-day cruises. I would like to know if my chances for recovery are better or can I expect things to keep going like this? Is there anyone else out there or any case histories of people who were only on a boat for a short-time and experienced this? I keep hoping that the next morning I will wake up and the symptoms will be gone but they are not gone yet. I know it has only been 4 days but I can't imagine living like this for months or years. Any response would be appreciated.
Thanks.
Toni
CT USA - Thursday, July 27, 2000 at 18:18:38 (EDT)Brenda, I wish you well as you go through the diagnostic process! The worrying is the hardest part! Unfortunately, since my 1st vertigo episode in 1988, I have seen three different neurologists through my local health plan. Although they were all very sympathetic I don't feel that any of them had adequate knowledge of the balance-vestibular system to diagnose something like MDD. Finding this website has been a godsend because it was the first time I realized you don't have to have classic Menieres or any of the classic syndromes to have this kind of rocking/dizziness problem. The most recent neurologist I saw for a consultation (6 months ago) attributed my constant sense of rocking to stress (in other words, "it's all in my mind.")...I hate to sound embittered, but it's so hard having a medical problem when you have to convince a specialist that it's real, it's physical, and it won't go away if you just work fewer hours. By the way, I am also trying to conceive - my second child. I also had some vertigo before I conceived my first child, and I had a perfectly normal uncomplicated pregnancy. If anything, the pregnancy reduced the symptoms, because the symptoms alway get much worse during PMS. By the way, my primary care doctor has suggested that I should experiment with a mild diuretic during PMS to reduce the rocking symptoms. Has anyone received that advice? I would love to see this site have more interaction and discussion about what we've found reduces our rocking sensations. Anyway, I hope things go well, Brenda, and let us all know!
Deborah
Berkeley, CA USA - Monday, July 24, 2000 at 16:17:19 (EDT), i have been diagnoesed with neuropathy , due to vitamin deffancy.any help your and your viewers can help,
would be apprecieted. thank you patty
pat mcglashing (justchilling220@aol.com)
camb, ma USA - Sunday, July 23, 2000 at 23:13:39 (EDT)Upon returning from a 7 day cruise on March 6,2000, my body failed to readapt to stable ground. I keep feeling as if I was still on the cruise, in particular like the rockiest night on the cruise. At first I thought it had to be pregnancy related; however, I miscarried into my 5th week and the symptoms of this imbalance continued. Then I began to think it was work related, being that I work with headsets all day long. I went to see an E.N.T who could not diagnose me, instead has sent me in for vestibular rehabilitation, after normal test results, including an echog,baer and MRI. My E.N.T. has refferred me to a neurologist, which I will be seeing in the upcoming week. So I have not been diagnosed as of yet. But, in reading through the symptoms on this website, it sounds exactly like the symptoms I'm experiencing. I will have to wait for the neurologist's answer.
Needless to say this constant feeling of unsteadiness creates depression. But a bigger concern is that time is going by and I would like to attempt again at having a baby. My fear in all of this is that maybe the brain is not receiving enough oxygen, creating the dizziness, and thus could have a serious impact on a pregnancy. Can anyone expand on pregnancy with MDD.
BRENDA R
ORLANDO, FL USA - Tuesday, July 18, 2000 at 20:38:42 (EDT)I have experience MDD many times after a weekend of boating on Lake Michigan. Each year, however, it seemed to occur less and now almost
non-existant. After a 5 or 7 day cruise on a ship, it does recur but
luckily goes away after a few days on land. I always take the precaution
of wearing the anti-nausea bracelets now--they are non-invasive and keep
me eating! Also, when I fly, I take a decongestant/antihistamine starting
the night before, use a nasal spray to insure nasal clarity, AND always
use Ear-Planes, those plastic ear inserts, during every flight. These
procedures have helped me.
Connie Nuttall (Nuttall@kalamazoo.net)
Galesburg, MI USA - Wednesday, July 05, 2000 at 18:35:52 (EDT)If anyone tried to find Wobblers Anonymous on line and couldn't, try Wobbler's with two B's. Thanks for letting us know about it, T.J. I missed the program but hope to learn more about it. Take care, out there.
Ann
USA - Saturday, June 24, 2000 at 17:03:13 (EDT)In regards to severing the vestibular nerve: my husband has worked with
a colleague who has done hearing testing on patients in France who have
had this surgery done. It is not a surgery normally done in the US. The
French patients did not have any effects on their hearing. However, the
surgery is normally done for patients suffering from Meniere's, not for
other vestibular disorders. We have thought about it, particularly on
very bad MDD days, but since it isn't clear that MDD *is* a vestibular
problem really, I'd be very careful of the whole idea. If you want to
get my husband's email address, please email me privately.
Anne Kelly (akelly@bpl.org)
Boston, MA USA - Wednesday, June 21, 2000 at 16:43:23 (EDT)HEY,
Did you see NBC dateline tonight? It was really interesting, a drug reaction causing balance didorder. Go to www.woblers.com
TJ
TJ
USA - Monday, June 19, 2000 at 21:13:57 (EDT)With regard to surgery to sever nerves, the doctors I have been to who
are familiar with Mal de Debarquement have all been unanimous that this is
absolutely not a cure. In fact, one went so far as
to say that if I heard a doctor suggest it, I should run as fast as
possible out of the office.
Evan Torrie (torrie@etete.com)
Stanford, CA USA - Tuesday, June 13, 2000 at 21:05:00 (EDT)Before going on a 6 day boat trip up the Columbia and Snake Rivers, I was a relatively healthy, active 34 year old woman. My high-stress but rewarding job as an educational researcher, writer, and trainer brought me tremendous satisfaction. My life wasn't charmed. I fell in love with a wonderful man who was diagnosed four years ago with a rare progressively degenerative disease affecting his central nervous system. My life was far from stress-free, but with the help of support from our families and friends we continued to lead full lives. Before our boat trip, three weeks ago, I was feeling particularly stressed about our impending move back to Boston. But the boat trip was wonderful, just what my spirit needed. Upon return, I had periods of manic behavior followed by extreme depression. I became disoriented easily and was alarmed by my inability to do things that had been second-nature before. Like many of you I went through the ususal meds, but I am not comfortable being on habit-forming drugs. I have yet to see a physical therapist, but I hope that will help me reintegrate what feels like the fragmented parts of myself. I'm anxious to know about coping mechanisms. I take my dog on lots of walks, drive around the city listening to strong women singers, and do a lot of pacing.
Leslie Haynes (haynesl@nwrel.org)
Portland, OR USA - Saturday, June 10, 2000 at 17:02:54 (EDT)My name is Trudy and I was officially diagnosed with MDD two days ago. I thought I would add my history in case anyone finds a cure. I experienced MDD 8 years ago after a four day houseboat trip. It only lasted a week and all symptoms were gone. A few weeks ago I took a two hour ferry trip to Vancouver Island and back. When I returned from the trip, I noticed by the next day that something was not right. The feeling felt vaguely familiar. I could not stop rocking and swaying and felt like I never left the boat. My parents were visiting and I masked my concerns, as I had hoped they would go away shortly as they did the first time, and I didn't want them to worry. After a week, I started to worry. I went to my doctor. He recommended an ENT. She saw me and began tests: bloodwork, then an ENG. I went back to see her after the tests and was surprised when she felt she had a diagnosis for me. She obviously did her homework and came up with MDD. She told me to find info on the net. When I did search it out, I was amazed to read the case histories on this website. I am a textbook case (if there was a textbook written about this). I am currently taking an antidepressant called "AMITRIPTYLINE". I started this a few days ago and have only felt very tired from it and the rocking seems a little worse. I have been researching and reading everything I can get my hands on in the last few days. Haven't found anything particularly encouraging, but some people have found relief through drugs such as "KLONOPIN, NEURONTIN, AND ELAVIL". As well, some say that vestibular therapy worked for them. I am interested to hear the results of the last entry on the forum - surgery to sever one of the imbalance nerves. Please keep the rest of us posted and let us know if your wife experiences any success. We are all very desperate to gain control of our lives again. I am so glad, however, to know that I am no longer alone with this. There are people out there who understand.
Trudy Larouche (trudyl@pacificcoast.net)
Vancouver, Canada - Friday, June 09, 2000 at 02:12:18 (EDT)My wife has been diagnosed as having MDD. She has had the symptoms for over eight years. (We will share the full story another time.) At that time she was seen by Dr. House of the renown House Ear Institute in Los Angeles. There was no mention of MDD then, so I am assuming this is a relatively new term for the disorder. Dr. House was going to do surgery to sever one of the balance nerves (there is one in each ear), but decided against it, concluding she likely was not suffering from a balance disorder at all but rather clinical depression. Her current specialist at USC's Balance Disorder Center has brought up the prospect of this surgery because vestibular therapy and various antidepressants are not working. My questions: Have any of you had such surgery or do you know anyone who has? What was the result? Thank you in advance for reading this and sharing what you know.
Steve
San Marino, CA USA - Sunday, June 04, 2000 at 17:32:15 (EDT)I am a 27 yr old male who has been on Paxil for little over a year. It has helped greatly with the on again off again depression and anxiety that I have been experiencing for as long as I can remember. A couple of days ago I started experiencing dizzy spells, slight on again off again head tingling on my left side as well as vertgo.
It symptoms occur when I turn my head upwards, or turn my neck and look up. When I lay on my back I also experience a very intense vertigo. the room will spin counter-clockwise continuously untill I sit up. It is at this point when I feal really dizzy and experience slight nausia. This has made me a little scared.
Thinking of possible causes as well as solutions to this problem, I can remember when I was about 14, I had a similar experience that lasted little longer than a week. It wasn't until I used a siringe filled with luke warm water to wash out my ear-drum canal that I experienced relief. Since then I haven't experienced this problem until about 2 days ago.
Since around the age of 5,I have also had many ear aches. I usualy experience about 2 to 3 ear aches a year. they seem to occur right arround the changing of the seasons. According to my doctor, My ear-drums have visible scars on them.
Also, I have had a slight ringing in my middle ear for as long as I can recall. Due to my former work environment (packaging metal bolts at Daimlerchrysler, since promoted to office job), I have also experinced some minor hearing loss. So my ears as you can see have seen better days. Is any of this related to my recent vertigo?
Today I tried flushing my ears with warm water to no avail. Thinking my occasional vertigo might possibly be allergy related I also made sure to take my allegra-D allergy medicine. None of these possible remidies have helped. What should I do?
On monday if the problem still exixts I plan on going to the doctors. I don't think that he will will be able to help me any though.
If anyone has any helpful comments or suggestions that might help or explain what the heck is going on, please e-mail me at Thumbs72@yahoo.com. This vertigo has got to go.
Dan Grundman (thumbs72@yahoo.com)
saint clair shores, mi USA - Saturday, June 03, 2000 at 23:23:37 (EDT)I am reading this website and can't believe I have found people with similar symptoms.
I have been looking for a diagnosis for my illness for almost 6 years now.
I have the heaviness in my head (mostly left-sided), pressure,
tingling in my head, (sometimes hands and feet), my body feels heavy when
I walk. I also feel motion in my head. When my symptoms are really bad, I
just want to sleep. I feel better when I ride in a car or plane, but I feel
worse after the trip. I also experience vibrations in my head. Has anyone
else had vibrations in their head? I have had two episodes of vertigo in
the 6years that I have been feeling this way. I would like to know if
this sounds like MDD and if any MDD sufferers have vibrations in their head.
Thank you.
Carrie Kurtz (mckurtz@gsbpop.uchicago.edu)
Miami, FL USA - Sunday, May 28, 2000 at 01:16:30 (EDT)Steve (The Harley Davidson rider)
Thanks for your comments regarding my request for information on a car trip to Toronto. I admire your attitude and philosophy of life. I wish I could be as adventurous as you are. After riding in the car for about one hour a week and a 10 minute boat ride to our island, I really get rocking for a few days. It is not only a nuisance but the symptoms do prevent me from participating in life the way I would like to. What's your secret? Colin.
Colin (coljoc@iname.com )
Winnipeg, Canada - Sunday, May 21, 2000 at 13:03:32 (EDT)Does anybody know when the topic of MDD will be scheduled on the Oprah show? Thanks for the info. Colin
Colin (coljoc@iname.com)
Winnipeg, Canada - Sunday, May 21, 2000 at 12:57:34 (EDT)Hi Deborah, I went to an ENT who attended the House Institute in California. I can't recall what city right now but it may be the L.A. area. I'm sure you can find the address, if not I will find out for sure. This doctor diagnosed me in about five minutes after going to one doctor after another like so many have done. I am on Klonopin which most people don't want to take but I was about to give up hope. I am in my sixties so I don't hesitate to take the Klonopin but do not want to recommend it for others unless they are as desperate as I was. It is not a cure but hopefully we will find one soon. I feel sure you can at least get information from the House Institute that explains the fact that MDD does indeed exist. PLease let me know if you find help and take care. Ann
Ann
USA - Saturday, May 20, 2000 at 23:58:26 (EDT)Wow, I am up in the middle of the night, thinking I must be able to find some reference to my problem on the INTERNET, and here you are! This is the most similar description of my problem so far. Over the past ten years I've had three acute attacks of vertigo with nystagmus, with residual feelings of rocking afterwards. I've had no vertigo for over two years now. But I overreact to plane, boat or car rides with a continuing sense of movement. Now I just feel it all the time, just feel like I'm on a plane, with light rocking sensations. Mostly I live a good life, but I find a few limitations. I get scared and depressed because no local neurologist seems to have any idea what the problem is, and I worry that it will create disabilities in the future (they think I'm just stressed, every doctor thinks it's stress if they can't explain a problem). I'm a teacher, and it's much harder to lecture standing up than it used to be, what used to be very natural is no longer, I'm feeling like I'm on a ship, constantly compensating for a sense of motion, and my students are sitting still, I can't imagine what it looks like to them! Lecturing near a lectern or with one knee up on a chair works, but I must say it doesn't make for electrifying lectures! Anyway, you'll be hearing more from me, I'm just relieved to touch base. Could anyone recommend a good physician who can diagnose this in the San Francisco Bay Area, or anywhere on the West Coast? Thanks so much!
Deborah
Berkeley, CA USA - Friday, May 19, 2000 at 07:38:24 (EDT)I had vertigo 10 years ago...was on antivert and it got better. I just returned from a trip to Europe last Friday and its all back again. I took sleeper trains and felt very dizzy but the dizziness went away in a day or so. Got back last Friday after a 10 hour plane trip and the dizziness isnt going away...its getting worse. Even typing this on the computer is difficult because the computer screen keeps floating about and nothing seems to stay still. Holding one eye shut helps a little, but I look funny doing that all the time. I think the train contributed to my MDD because I remember going through very long tunnels and my ears felt so much pressure and pain as we were going through those tunnels. Anybody have any referrals for help in the Orange County, CA area?
Patti (diamondinruff@yahoo.com)
Huntington Beach, CA USA - Wednesday, May 17, 2000 at 21:55:42 (EDT)I've had the symptoms of MDD (sans the trip) for 4.5 years. It's not
as bad as it was the first year and a half. I used to sway back and forth
2 or 3 times and then take a sudden drop like an elevator going down
too fast. I also felt like I was being pushed forward and down so I'd sit
way back in my chair. I don't have the dropsies anymore and I don't feel
like I'm being pushed down but I still sway whenever I'm still,
laying down, sitting or standing. I feel it less when sitting in a
well cushioned chair; it's worse with a straight back chair.
Anne Grant (bagrant@gte.net)
Plano, TX USA - Monday, May 15, 2000 at 17:12:26 (EDT)Hello everyone. It is nice to have this forum. I have been suffering from MDD for about 2 1/2 years. I have a question: are there any of you that have mitral valve prolapse? I have MVP and I have heard that there is a link between this and vestibular disorders. If any of you know anything about this, I'd love to hear about it. Also: is there any connection between MDD and listening to loud music? Thanks for your help.
Tommy Gamard (gamard@yahoo.com)
New Orleans, LA USA - Friday, May 12, 2000 at 10:52:24 (EDT)Has any one came up with anything new on this in the past three years? Have been doing fairly well until this past weekend. I flew to Reno and Back and now the rocking and swaying are back in full force, thought I would check to see if anything new has happened in this period of time
sfisher
USA - Friday, May 12, 2000 at 06:06:32 (EDT)Colin, Knock it off!!! I have it - sometimes bad and I still boat , fly , drive , ride motorcycles. Not just bopping around - I mean 70mph offshore style
boating. I have been taking flying lessons , getting drunk , riding my no suspension hardtail Harley 110mph - it shakes my teeth so bad at that speed it feels like my head could start bleeding. Please do yourself a favor and forget the word mal dis whatever and live your life. ps for anyone who wants to know if I really have it - my body can not find dead center and when I walk it feels like Im walkin on a loose dock. Not just when I eat bad food or shake my body up somehow - all the time. It is relentless , so screw it. I dont care anymore. Steve.
Steve
USA - Tuesday, May 09, 2000 at 10:42:31 (EDT)Dear MDDers,
I have been swaying since my first cruise in Nov. 1999. Can others actually see you sway? I feel like I am swaying when I lean forward, stand, or sit without the support of the recliner chair back. Others can see me sway/rock side to side as the day goes on and when I move my head up and down like on Sunday mornings at church trying to read the bulletin, sing from the hymnal. Dinner is tricky because I often sway/rock to the point that I need to hold onto the table when I am trying to eat. Have you ever experienced anything like this?
Like many of you, I have been seen by many doctors,specialists, chiropractor, physical therapists, undergone many tests but have not yet been diagnosed. I will be seeing Dr. Zee at Johns Hopkins in June. I check this site daily and look forward to learning more.
Thanks for your help.
Donna
Donna (nesbitt@usnetway.com)
PA USA - Monday, May 08, 2000 at 08:21:18 (EDT)Colin, I just returned from a car trip to and from Florida. 18 hours of driving each way. I did fine. I think you are better off driving than flying. I still believe that flying caused my MDD from the air pressure in my ears. I spent alot of time on the beach on the gulf and the waves are what made me feel crummy. If you are going to fly, my neurologist suggests to wear the patch for a couple days before you leave and to take valium too. Do the same on the return trip. Good luck!
Lynn (Follfam@aol.com)
Wi USA - Sunday, May 07, 2000 at 22:44:59 (EDT)Colin,
sorry about yesterday's reply. I must have BOUNCED when I hit the keys. Check with your neuro to see if he recommends valium when flying. My neuro told me not to fly until the motion stops,which it hasn't for 18 months, and after that take valium to TRY and prevent it from starting again. At least in the car most of us don't have the motion but you may get exhausted if you are doing all the driving. Good luck. Let us know what happens
Kaye (purplekat11)
USA - Thursday, May 04, 2000 at 21:54:39 (EDT)Colin,
I've been rockin and rollin for 18 months now and my neuro said
Kaye (purplekat11)
USA - Wednesday, May 03, 2000 at 20:38:40 (EDT)Please - I need some advice asap. I have suffered from MDD since a cruise in December 1999. It is necessary for me to take a 1,000 mile car trip over a 3 day period. Can anybody tell me if this will prolong my MDD by a substantial number of months. I also have the option of shipping my car and flying for 2 hours plus a 2 hour car trip.
Is it true that taking pills like Lorazepam will prolong the existence of these MDD symptoms?
Your comments would be appreciated. Thank you. Colin
Colin Young (coljoc@iname.com)
Winnipeg, Canada - Thursday, April 27, 2000 at 11:21:37 (EDT)It has been many months since I have added comments to the forum. I have had MDD for seven years. Recently the symptoms have increased and this may be due to the recent activities that are going on in my life, (work, family, travel, meetings, deadlines, my oh! my). These past few months have proven to me that it is so very important that I (and all of us who have MDD) need to really take very special care of ourselves. We need to eat well, rest when we are tired, get the proper amount of sleep, and try to have a positive attitude. I also agree with the previous comment that praying does help. I drink green tea and have noticed several times when I have gone a few days without my 3 to 4 cups of green tea my symptoms seem to be worse? Just a thought!
Arnold Bunting (buntinga@juno.com)
Oregon City, Or USA - Saturday, April 08, 2000 at 01:01:35 (EDT)I am a new sufferer of MDD, acquiring it after a 4 day cruise the first of March, 2000. Immediately upon return to land I felt the rocking sensation, although having heard this was normal for most people for a few days after a cruise, I was not concerned at first. After a week of riding 5-6 foot waves, I decided to see my family Dr. who prescribed meclazine, which of course, did nothing. I then saw an ENT the next week, and was very blessed to have a Dr. who immediately diagnosed me with MDD. He prescribed Tanxene, a form of valium, which I have taken when the waves are especially high. I have found it to somewhat calm the waves, but makes me extremely spacy. I'm not sure which is worse. For three weeks I suffered from continual rocking. Some days the waves were higher than others to the point of being disabling. I experienced continual pressure in my head and fuzziness in my eyes. Concentration was very difficult; sometimes even my speech was affected. At times I would have tingling sensations in my hands and arms. I could never ever get away from the rocking. I would sit with it, walk with it, lay down with it, wake up with it. The only thing that did help alleviate the symptoms was driving. Then, last week, the church I attend had a healing prayer service for me. Since then, I can only thank God that my waves have now subsided to gentle, rolling ones of 1-3 feet. I also can now sit or stand still and have the waves be almost entirely gone. My eyes now focus better and the heaviness and pressure in my head, although still there, are so much better than before. When I walk I now feel as though I am stepping on cushions. Still, the difference has been incredible and I thank God for that.
I'm wondering if there are more people that have tried Elafil and what their success was with it? Have more people tried accupuncture? And has anyone tried herbal remedies with any success? I have read some on the importance of supplying adequate oxygen to the brain in other instances of balance disorder so am currently trying a liquid product called "Hydroxygen" which is suppose to do just that.
I can hardly believe with the medical technology we have today, that there is so little known about this disorder and even less known about what to do for it. Too many people are suffering from this. Isn't there something we can all do to get research done on this? Or at least to draw attention to it so that more will learn this problem exists? Too many people share horror stories of what they have gone through before they finally get to a Dr. that even know what this is. Above all, I encourage all to turn to the Great Physician, God, Himself. He is the one who can ultimately heal. In the meantime, I join the rest of you in "Rocking Around the Clock!" We must find the humor in this somehow!
Mary (kampfam7@juno.com)
Dunbar, NE USA - Thursday, April 06, 2000 at 00:27:22 (EDT)I am so glad to have found this site! I took a 4-day cruise (my first) in December 1999 and have been "bobbing" ever since. Only when I walk. Sitting, standing, laying down and driving the car are no problem. Some days I am symptom free. On my "bad" days I have difficulty walking, experience numbness in my fingers and one side of my face, and my ears feel "plugged". Have been to my pcp who tested for B12 deficiency and ear problems - also did an MRI which was normal. Now I've had my initial visit w/the neurologist and am awaiting the results of extensive blood tests. I mentioned MDD to him and he wasn't interested at all. Said it was a malady that sailors who drank too much on long overseas journeys used to suffer from. Does anyone know of a Dr. in the Syracuse, NY area who believes in MDD? Thanks much!
Sharon (sgrey_staub@hotmail.com)
Syracuse, NY USA - Thursday, March 30, 2000 at 17:20:47 (EST)It would appear that I have the classic symptoms of MDD. The almost constant rocking unless my head is held completely still and feeling that the ground is moving when walking.
This all started in early December 1999 after a seven day cruise in the Caribbean. (A year ago, I took a similar cruise on the Pacific Coast and it took me 3 weeks to become symptom free). By the middle of December, I had caught the cold of the Century in cold Winnipeg. This is our first winter here. By early January, the instability had not stopped and we were on our way by air to Mexico. Before taking this trip, however, I contacted an ENT specialist who told me I had an over stimulated inner ear and it was O.K. for me to fly. Ha Ha!!!
After spending 10 days in Mexico, we decided to return to Canada and seek medical help. As you might have heard through the media, Canada's healthcare system is close to a disaster. It is plagued with incompetent doctors who keep you waiting forever for an appointment. After going through 3 ENT specialists providing the following diagnosis: 1. A central nervous problem, 2. Peripheral Neuropathy, 3. MDD or some other exotic diagnosis. (The third one was a neurologist). I have had a Cat scan and sinus x-rays (all negative).
I feel best when I am riding around in my car or when I am sitting completely still while watching T.V. I just started to take a drug called Serc 4mg 3x a day (Betahistine). Will see what happens. I also find that taking a Lorazepam .5mg seems to help me sleep soundly. It also provides relief during the day if I get really bothered by the symptoms.
Colin Young (coljoc@iname.com)
Winnipeg, MB Canada - Friday, March 24, 2000 at 12:23:14 (EST)Hi everyone, Two days ago I was diagnosed with MDD. I have been suffering for nine months however, unlike most of you, I developed these symptoms after a bout of flu. Never set foot on a plane or boat for years. I have also experienced the same thing as Sherrie, Dec 12, 1999 - feels like everything in the body just stops for a second then I feel as if I'm going to pass out. Body feels numb and hands start tingling then I start trembling and my left eye pulsates. Afterwards I am exhausted and need help just to walk. These episodes I'm told by my doctor are anxiety/panic attacks. Tingling hands are due to hyerventilation. Herbal remedies such as Valarian, Hypericum and Sedacalm have helped me with the anxiety. Also progressive muscle relation helps. I also have sinus tachycardia and ectopic heartbeats due to stress of anxiety/panic attacks. It's a vicious circle but one I'm determined to break out of. If anyone eperiences the same - would love to hear from you.
Jenny Meadows/Grindal (jen@toptensoftware.com)
Sydney, NS Australia - Tuesday, March 21, 2000 at 22:52:17 (EST)I just had to let everyone know about this great new cure for MDD I've just tried. I just got back yesterday from a two week cruise through the Panama Canal and I have absolutely no symptoms!! It took me over two weeks to get rid of the symptoms after a 4 day cruise in January, so I'm very excited about this.
First of all, after reading some of the comments on this page, and receiving some wonderful advice from some of you, I drank a lot of ginger tea before I left. This did not help in January after the trip, but I thought it wouldn't hurt to get it into my system before the trip. I also went to a health food store and discussed this with the lady there. She said she had had a woman come complaining of the same symptoms and she sold her a package of "Hyland's Homeopathic Motion Sickness" pills. I told her that I don't have motion sickness just the rocking afterwards. She said that was the same as what the other person had, so I bought a package and took them on the last day of the cruise (the sea was pretty rough that day) and as soon as I got ashore - no rocking sensation! No dizziness! No feeling like I'm in a thick fog! I'm actually at work and functioning at full capacity the day after the cruise ended. I can't believe it.
I know everyone has different symptoms and not all cures will work for all people, but for the $10 it costs for these little pills (they dissolve under your tongue) it's worth a shot!
Good luck all.
Kim (lex_one@yahoo.com)
Edmonton, Canada - Monday, March 20, 2000 at 19:13:10 (EST)Ann, I took klonopin for almost nine months, and had no problem getting off of it, when I swithched to Elavil. I have been pretty much symptom free for three days now. The Elavil combined with walking short walks three times a day, has really helped. I hope to eventually try working off of Elavil as Marilyn Kidson did. If anyone has not read her "case history" I encourage you to do so. It is on the support page of Evan's MDD web site. TJ
TJ
USA - Saturday, March 18, 2000 at 13:01:04 (EST)TJ,I had an appointment with a Neurologist who had never heard of MDD but was very interested in it (unlike some). I had taken a copy of the MDD page with me and he had taken time to read it. He was telling me about Neurontin which is an anticonvulsant used to treat seizures associated with epilepsy (as is Klonopin}. I am going to call the ENT who told me I had MDD and prescribed Klonopin and ask him if he is familiar with Neurontin. I am pleased with what Klonopin has done for me but could certainly like to use something that is not additive. As soon as I talk with him I will pass on what I know. Thanks for asking and take care.
Ann
USA - Saturday, March 18, 2000 at 10:30:04 (EST)Ann, that drug sounds familiar... after two years of "experiments", who can remember? What is it exactly?
TJ
USA - Thursday, March 16, 2000 at 12:52:28 (EST)Has anyone heard of using the drug Neurontin? I would appreciate any comments on this. Thanks. Ann I also hope all of you are doing better.
Ann
USA - Thursday, March 16, 2000 at 12:05:29 (EST)Anyone out there ever experience stabbing ear pain?
I have had MDD for over nine years and yesterday for the first time
I had stabbing pains in my ear all day long. Today they have vanished
as mysteriously as they came. Please respond if you have experienced
this. thanks. sherrie
Sherrie (lithrlnd@midwest.net)
carbondale, il USA - Friday, March 03, 2000 at 15:43:36 (EST) 28feb2000, I found this forum on Thursday 24 Feb, Like a lot of other people I had no idea that MDD existed. However, after reading the case histories, I Know, I must help. Therefore, I will treat anyone with MDD
with hypnosis and without charge. Please E-mail coconus@his.com
Its Time to stop rocking the boat
Jerry
William (Jerry) Van Camp (Coconus@his.com)
Silver Spring, Md USA - Monday, February 28, 2000 at 09:36:45 (EST)Yesterday(2/20/00) in the Family Health section of the Chicago Tribune there was an article on motion sickness by Verna Noel Jones. Dr. Timothy Hain was one of her quoted sources. All of you have devoured all the info in this site know that Dr. Hain and the MDs in his office are some of the few MDs in the country who are readily able to diagnosis MDD. I have sent an email to Verna in the hope that she may like to do a followup on the motion sickness that keeps on giving long after the cruise is over!!! If any of you have the time, it might be good to let her know about your conditions and maybe we could get the word out this way. Her address is vernanoel@aol.com. And for those of you who ask about help, this is my 17th month of CONSTANT swaying, rocking, bobbing, and weaving and NOTHING (klonopin, valium, accupuncture, homeopathy, chiro adjustments, physical therapy) has helped me. If any one has any other ideas please let me know.
Kaye Rahn (purplekat11@aol.com)
Chicago, IL USA - Monday, February 21, 2000 at 16:57:07 (EST)I am new to this site. I have MDD. Can you contact me at my email address. I am interested in learning more about dealing with mdd. thank you
cosettemillar (cosettemillar@juno.com)
Clinton Twp, mi USA - Sunday, February 13, 2000 at 18:15:58 (EST)Oh my gosh, I can't believe there is anyone else out there that has this! I've just returned from another trip ruined by "my dizziness". None of the Drs know what to think, and as an occassional depression sufferer, I just figured I was getting worse. I get this when I fly, or use elevators alot, but have not dared to get on a ship since first experiencing it. What do you do? Is there anything that helps? Mine dies down after about three weeks after travel, but is awful. Is there anything anyone can suggest? It is so great to finally know that I'm not crazy and that there are others out there. Please comment on coping techniques
kath (punzelsfamily@att.net)
colo spgs, co USA - Sunday, February 13, 2000 at 16:09:06 (EST)This might seem like a silly question but does anyone have problems with wearing bifocals. I am currently experiencing symptoms of MDD and I am being faced with needing bifocals. Just the thought of wearing them makes me rock & roll.
Denise Milner (milham@worldnet.att.net)
Meridian, ID USA - Thursday, February 10, 2000 at 14:51:33 (EST)Sorry about email address below. I forgot the numbers in my address. I could blame it on mdd, but actually just computer challenged!
Josie (Josie216907@yahoo.com)
Il USA - Friday, February 04, 2000 at 10:32:23 (EST)Rebecca, I think I get what you mean. I feel like my brain is stuck in drive and I can't get it to go to park. So when I am moving I am fine but if I stop I'm screwed. I think the more I think about it the more I notice it and every new sensation gets attributed to it. That is why I am considering hypnosis to tell my brain I am not moving. What do you think?
Josie (Josie@yahoo.com)
IL USA - Friday, February 04, 2000 at 09:36:09 (EST)I've had this sh-- for 8 months now. Has anyone thought this is just a patten your brain picks up on -like a song on the radio you can't get out of your head? How many people picked up new symptoms since reading about them on the forum? I have. As anyone ever thought that the drugs like evail brake the pattern by distracting the person enough to let your mind forget the pattern of motion. My point is I dont belive it to be a mal function of an internal body organ - but it is real. Rebecca
Rebecca (none)
Lake Ozark, mo USA - Thursday, February 03, 2000 at 22:59:08 (EST)Happy New Year everyone. I have been reading these postings for a couple of months and am very grateful for all of you. I have been having these symptoms which you describe since a trip to Alaska three years ago. Usually the symptoms taper off eventually for three or four months and then come back (usually in the winter) Anyway I will have you know that I rode the ferry from Vallejo to San Francisco and back with no effects. It is the first time I have been on any kind of boat since this all started. Of course when I drove home two days later (400 miles) I got out of the car and thought we were having an earthquake for a few moments. Stuff is sneaky.
Bob Chandler (bchan1419@aol.com)
La Puente, CA USA - Tuesday, February 01, 2000 at 01:23:19 (EST)Hello, fellow sufferers! I guess itís time that I do more than just read all of your comments, which I have been doing since late July. On January 17, I marked my first year with MDD. I am a middle-aged woman who took her first cruise last January to the Caribbean. It was seven days long, smooth seas; I experienced no seasickness and had no illnesses at the time. I feel as if Iím walking on a trampoline all the time; going up and down stairs is like walking on a rope suspension bridge; when I close my eyes in the shower, I might as well be surfing; and walking out of a dark movie theater without toppling over is a real challenge. But I love feeling NORMAL when I drive! After a brief first approach of "Letís give it a month and then see . . . , " the ENT Department at the UNC Hospitals in Chapel Hill, NC, together with the Rehabilitative Medicine Department, moved rather quickly in pinpointing what was going on. Like many of you, my hearing test and ENG were normal. I guess Iím fortunate they knew enough not to do an MRI. I was given a lengthy set of vestibular and balance exercises to do 3-4 times a day. The balance exercises strengthened my ankles, but the vestibular exercises did not reduce my feeling of constant rocking and/or swaying. Consequently, and regretfully at this point, I gave up on them in June. In late July, I traveled to Baltimore to visit family but mainly to see Dr. Michael Clark of the Psychiatry Department of Johns Hopkins Hopitals. He officially put the name Mal de Debarquement to my symptoms and gradually increased the Zoloft I was taking from 50 to 150 mg./day. That was to ensure that depression was not a component of the symptoms. His next recommendation was to try Klonopin and lastly an anticonvulsant. I have chosen not to try either at this point both because they are addicting and because a number of you seem not to have benefited from Klonopin. The Antivert and Valium I took briefly early on didnít touch the MDD. In June I tried four sessions of acupuncture which did nothing other than relax me. I am now looking into hypnosis as a possible remedy. HAS ANYONE TRIED HYPNOSIS YET? Please let me know, ASAP.
Judy M. (judymessen@prodigy.net)
Chapel Hill, NC USA - Monday, January 31, 2000 at 23:26:43 (EST)Wow! I had no idea that this was such a big problem. I just got off a weekend cruise and am floating and bobbing my way around and was just looking for a quick fix for what I hope is a very short temporary condition. However, having read your comments and the info provided, I realized that my mother suffered from MDD for years after a trip to the UK. She always called it her 'dizzies' and it was very disturbing for her. She was finally able to obtain relief by attending at a chiropractor. She did not believe in chiropracty prior to her attendance, so I feel this is a good indication that it does help. Has anyone else tried some of the non-traditional methods of healing? (Like acupunture, ear candling, etc.)
Kim (lex_one@yahoo.com)
Edmonton, AB Canada - Wednesday, January 26, 2000 at 12:53:49 (EST)Was wondering how those of you taking klonopin are doing?
I just started and also wanted to know what dosage and how often you
take it? How soon should I expect any type of results?
Your input would be greatly appreciated.
sherrie (lithrlnd@midwest.net)
il USA - Sunday, January 23, 2000 at 15:12:03 (EST)To Tisha.
I know the stress you feel is horrible. All the symptoms you feel are very real and don't let anyone (especially a doctor) tell you that they are not. If you read all the letters her you will find all the symptoms you described. Most of the time my eyes burn, I'm exhausted, I run into things, the floor seems squishy or tilts back and forth, etc etc. Try calling Dr. Timothy Hain's office at Northwestern Hospital in Chicago. Maybe they can refer you to an MD in your area. Then you will have a formal diagnosis. Unfortunately, you won't have a cure.
Keep up the good work cowpatti - let's all bob and weave on the Oprah show!!
Kaye (purplekat11@aol.com)
Chicago, IL USA - Saturday, January 22, 2000 at 22:07:52 (EST)I don't know how I missed this site when I was researching vertigo almost a year ago. This is all very interesting!! I am pretty sure that my problem started as a result of a broken nose, long story, that workmans comp did not think I had. "I didn't show the normal signs of a broken nose." As it turned out it was broken very badly into my sinus. Took some pretty powerful med's and cleared everything up. I was in the process of getting my pilots license when I wasn't feeling quite right in the airplane, always trying to stall it. I also felt very funny when walking. It felt like I was walking on foam rubber. I went to a doctor who is also a pilot thinking he might know something about this. He did a very through ear test on me and when it was finished he ran in the room and told me he thought I had a brain tumor and was sending me in for an MRI at that moment. Who could blame me for starting to spin. Of course they found nothing, just 97 percent loss of nerve function in my right ear. Result, no pilots license, lots of valium. About a year later the motions stopped. Two years go by with no symptoms and my husband and I go on an Inland Passage Cruise. I didn't get off the ship for 14 months. Back to all the specialist and tests. Still have the 97 percent loss of nerve function in my right ear. This time they thought I had MS and had a spinal tap added to the battery of tests. No MS but there is a large spot showing on the MRI. They told me about all of the drugs I could try and I refused. I will just cope with this little problem. All of a sudden it was gone again. Eight months passed feeling wonderful then wham, back again. I am into it now for 4 months and counting. At least I know that there is nothing seriously wrong with me. I am bothered about my loss of concentration, spelling and communication problems but I will deal with it. I keep a dictionary with me all the time. I would like to say Thank You for everyones accounting of their symptoms and Evan Torrie for this site.
Denise
Denise Milner (milham@worldnet.att.net)
Meridian, ID USA - Monday, January 10, 2000 at 19:01:44 (EST)I have been checking this page many times a day for the last month. I got married 3 mnths ago, took my 1st plane ride (only about 2 1/2 hrs. one way), and woke up the next morning with what I thought was the usual cold I get, but this time I had dizziness. I came home a week later and was treated for the next month for middle ear infections (both ears). Finally, the infection went away but the dizziness didn't. To the point: I have been to 3 ENTs, had all the tests, and of course they have all come back normal. I stumbled upon this page last month and literally broke down crying when I saw myself being perfectly described on the page. I just came back from our medical university where the department chairman said he didn't know what was wrong either, and he made it perfectly clear that he really didn't care to find out. In a last ditch effort and out of pure anger with this man, I asked if he was familiar with MDD. He is, but says there is no way that an airplane ride can precipitate it, and that getting a cold and ear infection the next day is plain coincidence. I am asking any of you to please email me and describe the rocking and swaying movement for me. I tell people that I feel like I'm on a boat; sometimes feel like I am on a ferris wheel seat swinging; other times I feel like I am walking on a mattress or soft floor. I know it sounds silly to ask you to mail me and describe it, but I am really starting to doubt myself. No one understands here (thank goodness!) what I am saying. This is becoming mentally and physically taxing on me. I am only 28 and this is the roughest time I have ever had. I am not even getting to enjoy being married, and my husband is very stressed and worried but trying to hide it. Also, if anyone knows of vestibular therapy in Columbia, SC or Florence, SC, please mail me. I can't drive 2 1/2 hours to Charleston. Last request: if any of you have been officially diagnosed with MDD by a doc in SC, NC, GA, TN or at the Mayo Clinic in Jacksonville or at Duke University, please email me. I am desperately searching for someone to listen. Thanks for letting me take up all this space:) Knowing that other people who are going through this too actually believe what I write means more than you could know.
Tisha (tishaw89@yahoo.com)
SC USA - Friday, January 07, 2000 at 20:39:04 (EST)Don't know if I have this but everything you all say fits. I have had an ENG,ABR, catscan, MRI. something is going on according to the eng but can't find what or why. I can't pinpoint when it started but I feel it was during or after a trip that included air travel and boat travel. Also suffered some heavy duty migraines. It started slowly and I now have very bad episodes or sometimes very mild days. It is pretty much constant though. It is worse when I am tired. It is bad when I am in places like malls or stores or anyplace I feel with alot of visual stimulation. I always felt it was associated with my eyes. I now think after the ENG that that is the eye movement trying to steady me. Lately it is actually waking me up. I am not dizzy when driving or if I am very active. Moving around the house cleaning and stuff. Sitting and standing are bad also. I stand in one spot with my job. It is in a very noisy place with bad lighting and bad air quality and I also work nights. This all seems to be against me. I have to take sominex to sleep during the day. Do you think this makes it worse? oh well
Corrie
USA - Friday, December 17, 1999 at 20:43:09 (EST)I'm so thankful that I found all of you on this Web page. I thought I was losing my mind for so long (so did eveyone else), then I found all of you guys and suddenly felt like I wasn't alone anymore. It was a nice relief to know there were others out there like me. I've been reading all of your comments for the past 9 months now and my heart goes out to all of you. I finally decided to write and share my experiences with everyone. I have been suffering with MDD for 15 months now, after an 8 day cruise to the Carribean in August of 1998 and I haven't stopped rocking and crusing since. I was a very happy, healthy and very active individual before this all started. It has been devastating to me and has really changed my life drastically. I can't even go on my boyfriend's boat anymore. I cry so much, I'm pathetic. I just can't understand why this rocking continues and no one out there can help us or do anything about it. I've been to various doctors and tried lots of different drugs. The best thing that helped me was some physical therapy I received at the Hearing and Balance Center in SLC, where I was diagnosed with MDD. I had therapy for about 4 months last Winter. After the therapy, I finally had some days that would be good for me (I mean even back to normal sometimes - it was so great). I did a lot of walking and feet type exercises - some different head and eye movements with it. It has definitely gotten better than it used to be in the beginning months, but some days, it just comes on me with a vengence. I really believe it has something to do with my feet and legs, that's where I really feel it the most, then it makes me dizzy and have blurred vision too. It pulls on my legs so bad sometimes. They taught me in thearpy to stand up steady next to a wall for a while and I find that helps me a lot. I believe that no sleep and stress definitely contributes to it. In fact, when I went on the cruise, I was very stressed out and tired. I totally agree with Kathy's comments about getting a forum together to get this out into the news media. If it was made more public, maybe someone would take a concern in us and try to find out how to help us. My hopes and prayers are with you all. I hope we can soon find a cure, I can't grow old with this, it makes me too unhappy. Keep the comments coming. . Thanks Torrie for this page. My best to all of you. . . .Lou
Lou Myers (lmyers@media.utah.edu)
Salt Lake City, UT USA - Tuesday, December 14, 1999 at 23:05:32 (EST)Help! Anyone please?
Every time I decide that I have MDD I get a symptom that is so scary I
began to question myself. I was wondering if anyone has ever had the following to happen to them. I was sitting perfectly still and out of nowhere
my head suddenly felt as if it was being pulled down or like all the blood
supply was being cut off. It lasted a few seconds and afterwards I was
completley zapped. Also, my fingers tingled --- maybe adrenaline from
sheer panic of the feeling I was having???
When this happened I was very tired and had not had much sleep.
In fact, I have noticed that the symptoms are twice as severe if I lose the
least amount of sleep.
Has anyone experienced this head thing? Please write if you have.
It was so scary and I haven't seen much on MDD with people complaining
of feeling like their head is being pulled to the floor or all the blood being
cut off.....
Thanks
Sherrie (lithrlnd@midwest.net)
USA - Sunday, December 12, 1999 at 17:13:19 (EST)I seem to be the veteran in this group. I had mdd symptoms after a barge trip in 1993. My severe symptoms lasted for approximately two years and then gradually subsided. But I have to warn you that I have accepted it will always be a part of my life. I have what I refer to as dizzy days. They are never as bad as those days during the first two years and are infrequent but it is definitely a part of me. I have tried to analyze why the symptoms occur on certain days and haven't really come up with anything. I have even linked it posssibly to changes in barometric pressure. Does this sound goofy? What a strange syndrome! It was validating to see myself in the study that came out of Dr. Hain's work.
ce (ce1555@aol.com)
chicago, il USA - Sunday, December 12, 1999 at 00:03:32 (EST)Hi all you rockers out there - I described my mdd a few letters down and the diagnosis procedure. My MD (who is in Dr. Hain's practice) did not relate this condition to anything else other than the cruise from hell. He did say it would aggrevate the Epstein-Barr because if effects your REM sleep since your brain thinks you are in motions even when asleep. I am constantly tired as my mdd is not episodic but has been going on 24 hours a day for 14 months. For those who asked about drugs, neither Klonopin or valium helped and I only took them for a short time at the beginning because I didn't like the side effects they caused. Also, read about Klonopin, it has some pretty drastic side effects, but anyone taking it should wean off it very gradually. Hope this info helps.
Kaye (purplekat11@aol.com)
chicago, IL USA - Thursday, December 09, 1999 at 23:00:02 (EST)Hi Lynn,
I've had MDD off an on for 3 years. It's not fun. I don't believe that
doctor you went to either. The information that is out there seems to describe the problem to me. It's not stress. I don't get very stressed. Besides, I have this dizziness at times when there is no reason to be stressed. Anyway, I have taken Zoloft in the past and it
seems to help me a little at least. It's worth a try. How is it working
for you?
Kelley
Kelley S. (kelleysh@spu.edu)
Seatte, WA USA - Wednesday, December 08, 1999 at 22:06:25 (EST)Hi everyone..well I went to an oto-neurologist yesterday and he seems to think that no one has Mdd longer than 8 months or so. He pretty much chalked it all up to stress. This really bugged me considering all of us who have had it for over a year. He has advised me to get off klonopin because it just supresses the balance system and it will just make it keep going on. I would like to know if anyone else has heard this from an oto-neurologist. The klonopin has really helped but now I am wondering if I should get off of it. I take 1 milligram a day along with Zoloft. I would love to hear anyones opinions. This doctor also thinks that these websites are full of misinformation which I of course disagreed with. Any comments????--Lynn
Lynn (Follfam@aol.com)
Wi USA - Tuesday, December 07, 1999 at 13:12:56 (EST)Hi Lynn and all, I have been taking Zoloft along with the Klonopin, actually, I was on the Zoloft first. I only felt better after adding the Klonopin but it doesn't seem to do as much good as it did at first. However when I stopped taking it at one time I realized it was helping me more than I knew. It was much worse while off of it. I wish we could find an answer to our prayers. Take care, Ann
Ann Criss (fcriss@network -one. com)
Corinth , MS USA - Monday, December 06, 1999 at 19:45:01 (EST)This is to Kelley...I am always tired when the Mdd hits me. I really think it is linked to sleep also. The later the day gets, the more I start feeling the MDD. I am going to an oto-neurologist on Monday for an another opinion. I am at the year mark with this thing. I don't expect any miracles but I hope he can shed a little light on this thing. Has anyone tried Zoloft? My doctor has just started me on it to see if it helps. I would like to hear from anyone ever taking this. Thanks and take care everyone.--Lynn
Lynn (Follfam@aol.com)
USA - Friday, December 03, 1999 at 19:35:09 (EST)Hi,
I was just wondering if anyone ever suffers from constantly tired eyes
just prior to or during a bout of mdd. I haven't been too dizzy for awhile, and I've noticed in the past that when the dizziness starts to come back, I get really tired all the time! So, now I'm getting tired, and it makes me suspect that I am soon going to be dizzy again. :(
Anyway, I was just wondering if this ever happens to anyone else.
Thanks,
Kelley
Kelley S. (kelleysh@spu.edu)
Seattle, WA USA - Friday, December 03, 1999 at 15:25:23 (EST)Re: My comment below: I entered my EMail address incorrectly...it should be pln4669@montana.com Guess I need a proofreader!!!
Susan Schroedel (pln4669@montana.com)
Plains, MT USA - Sunday, November 28, 1999 at 23:29:31 (EST)My saga began after a much-anticipated cruise in September of 1999. After 7 days aboard the "love boat" to Alaska, and our eventual disembarkment, I could NOT get rid of the "swaying, rocking, sensation". Now, two months later, I still have the uneasy, queazy feeling as though I were still on that damned ship. I have not been officially diagnosed with MDD. I did go see my general practitioner who, after a 30 minute office visit, proclaimed me to have "non-specific dizziness". Fortunately, I have an extensive medical background, being a healthcare professional and medical language specialist. I transcribe medical documents and pay close attention to what I transcribe. I made a decision LONG ago NOT to fall prey to the medical community who will order test after test after test....only to all come back negative. So, when my GP suggested that I come back in two weeks if I had no resolution, I knew that I would do my own research and find my own method of treatment. Fortunately, I work from home on my computer and need not commute to a daily job. Also, my sheer stubborness has allowed me to continue with my normal daily routine even though with a little less steadiness than I had prior to the cruise.
I have a little apprehension as I will be flying (just a one hour flight) on the 3rd of December. I really prefer not to begin a course of ANY medications, meclizine, Valium, etc....as the medication merry-go-round has its own set of problems, in my opinion. VEDA has been very helpful in sending me a list of physicians in my area of Montana who perform vestibular rehabilitation therapy...and I will probably proceed with that if my symptoms have not spontaneously resolved within 2 months. Best to all of you who suffer that "on the boat" feeling. It is like the CRUISE THAT WILL NOT END!!!!!!
Susan Schroedel (plm4669@montana.com)
Plains, MT USA - Sunday, November 28, 1999 at 23:25:13 (EST)To everyone who has been diagnosed with MDD or are fairly certain that they do have MDD, if you are also part of the mailing list on our MDD forum, I would like to let you know we are trying to get media coverage for our very rare syndrome of MDD and we need all people who would like to be counted in so that we have an accurate count of how many of us are suffering with this and are part of this web site.
You can do an Introduction of yourself if you are newly joining the mailing list. Just give us any information that you would like to about yourself. If you would like to remain anonymous, but still be counted in, than e-mail me personally and I will keep your name and personal information strictly confidential.
Also, writing a case history to go on our web page would be very helpful to all doctors or researchers who could easily access this information about how you got MDD. If you don't want a case history on the web page but do want others on our mailing list to know who you are please do write in.
If you would care to provide this information it would be helpful also-
Name-(optional)
e-mail address-(optional)
Age-
Sex-
Duration of MDD symptoms-
Name of your doctor ONLY if he/she knows anything about MDD
Activity that brought on MDD-
Diagnosed or Undiagnosed by a Physician-
Personal comments-
Thanks so much,
Patty
Patty (cowpatti50@aol.com)
Stanton, CA USA - Sunday, November 28, 1999 at 02:02:52 (EST)Hi Lydia, I am not sure if you would call this a link between Epilepsy and MDD, but the drug Klonopin is also given for epilepsy in some cases. I don't know too much about it but I do take Klonopin for MDD. This isn't much but I hope you are doing well. Take care, Ann
Ann
USA - Sunday, November 21, 1999 at 19:44:47 (EST)Hello all you nice folks ~
I posted in August noting that I had recently been diagnosed with MDD because of a constant CONSTANT rocking sensation, etc., etc. After an MRI at Massachusetts General Hospital and an consultation with an ENT Neuro-whatever, I was told "You DON'T have MS". Lately, though, in addition to the rocking, I often have dizziness and some tingling in my hands and/or feet. Does anyone else experience this? I surely would appreciate hearing from you if you do. Thanks very much. Kathy C., - Boston, MA
Kathy (Lyrics3@aol.com)
Boston, MA USA - Saturday, November 20, 1999 at 22:20:26 (EST)Has anyone found any link between Epilepsy and Menier's Disease? Seems that both are in the family and thhis seems coincidental? Also these diseases or conditions seem to have appeared in mid life. Please if anyone knows of any information or studies on such a matter-would be appreciated.
lydia Charak (lcharak@fcb.ca)
toronto, on canada - Friday, November 19, 1999 at 18:14:50 (EST)I first found this site in Feb 99 after being diagnosed with mdd by Dr. Micco at Northwestern Hops. in Chicago. He was the 5th md I saw. The 1st neuro gave me Klonopin which was no help except to increase the symptoms. He also had me do an MRI in case of brain tumor. Finally he suggested the ENG which measured an erratic beat between the vestibul;ar and brain and then he sent me to Dr. Micco who was able to diagnose the mdd. The ear nose & throat MD put me on valuim which did no good except make me sleep. My chiro and the ist nearo both tried the head rolling technique as they were sure it was crystals. My primary MD had put me on antibiotics for the "weirdest looking ear infection"
At least Dr. Micco's diagnosis was a devil known type of relief.
This started when I was on a turbulent cruise thru the St. Lawrence and Atlantic Oct 98 and persists to this day(Nov 16 99). It has not stopped for one minute!!! I work with a homeopathic practitioner and a native American healer who does rekei type motions to realign the electical around the body. Sometimes this treatment makes me even sicker. As I also have Epstein-Barr virus and firomyalgia I feel completely exhausted all the time. I work at my own cat care business and management consulting but I am sure I could not punch someone else's clock and that is a little scary. I am taking classes at church to increase my faith and trust that I will be provided for. That seems to be what gets me through. Thanks for being out there to talk to. I will look forward to hearing from others and will share symptoms in a future letter (grocery aisles, jumping walls, etc.
Kaye (purplecat11@aol.com)
chicago, IL USA - Tuesday, November 16, 1999 at 14:42:02 (EST)Bernard,
E-Mail these people and tell them your needs.... Veda@vestibular.org
They will send a list in your area, I hope they have Canada. I found three in my area on their list, but only one who had even heard of MDD, but she had never seen a case of it. God Bless You in your search. TJ
TJ (P-TIVEY@prodigy.net)
USA - Saturday, November 13, 1999 at 17:17:37 (EST)Hi Bernard, Have you tried seeing an ENT who specializes in balance problems? After seeing just about every kind of doctor, this was the only person who even knew what MDD was. He certainly helped me. The very best of luck to you and take care. Ann
Ann
USA - Friday, November 12, 1999 at 00:07:10 (EST)Hello. I have been experiencing symptoms of MDD since I went on a cruise last December. These symptoms include a lack of balance, fatigue, heaviness in my head and heaviness and weakness in my legs. I have seen several doctors and none have been able to give me any answers. I have had a balance test, a MRI , a spinal tap and several others.My local neurologist has given up so I have an appointment to see another neurologist who I have been told is familiar with MDD. If any reader of this comment knows of a Vestibular Therapy therapist in Ontario, I would appreciate hearing from them . Thanks Bernard
Bernard Desjardins (bpac.desjardins@sympatico.cas)
Sudbury, ON Canada - Wednesday, November 10, 1999 at 10:27:04 (EST)It's been a year since I've logged on--my last entry was to share the "miracle" cure for my episodic MDD [lasts about 2 months after travel--goes back to about 1988] I'd found with ginger. I was confident enough to re-commence air travel--ginger worked after a 2-3 hour trip to Vegas in July. My cranial masseuse suggested gingseng, and then I got really cocky--went to Cyprus in August [pole flight of 9 hours to Europe,5-hour layover, 5-hour flight to Cyprus]. Symptoms hit after a few days but using ginger and gingseng seemed to keep the MDD completely under control--even despite a hellish ['no-pole'] return trip w/5 take-off and landings and lasting about 36 hours. But a routine 1/2 hour drive 10 days later seemed to undo the herbs' effects, and I've been suffering since mid-Sept. Taking high doses of gingseng does take the edge off. Sure glad you're still here!
Kim Gerhardt (sumbeamtiger@hotmail.com)
Tacoma, WA USA - Sunday, November 07, 1999 at 15:40:22 (EST)TJ - Yes, someone has managed to email me (from my last note on this forum) at the new address... Sorry you are unable to contact me. Perhaps you will have to resort to posting your comments here!
Sara (sara@networx.net.au)
AUSTRALIA - Friday, November 05, 1999 at 11:06:42 (EST)Just wanted to say thank you to everyone that responded to my posting.
I was feeling so horrible and hearing from all of you helped so much.
Keep pushing on....
sherrie
Sherrie (lithrlnd@midwest.net)
USA - Thursday, November 04, 1999 at 13:16:40 (EST)In response to recent comments from Sherrie on 11/1/99. My MDD does make me tired. I work Monday thru Friday and by the middle of the week I am starting to feel my MDD symptoms more than on Monday. The fatigue factor comes when I have to concentrate for long periods. I am more aware of the rocking and swaying when reading as the words on the page seem to jump around also when I am walking down a hallway I feel like I am on a ship at
sea. Sitting here now I feel like the ocean is below me. So I try to get
proper rest and also walking in the fresh air seems to help. God Bless us all!
Arnold (abunting@juno.com)
Oregon City, Or USA - Wednesday, November 03, 1999 at 23:58:14 (EST)Hello. It has been a while since I have posted --- been so depressed with
this awful feeling in my head...
I have been experiencing a lot of furniture and walls jumping out at me lately. Anyone experience this? I am standing still and usually something
from the side jumps or sways. Also feel pretty weak in the legs when my
head is swaying and rocking. Do you all have this feeling?
Also, people tell me that they can tell when I don't feel well cause my face
looks strained and tired. Are you all tired all the time? I am exhausted.
There are a few hours in the morning that I feel halfway decent.
I am an anxious person and I find myself thinking about this illness all the
time, wondering if it is truly MDD or something worse. It is hard not to think
about something that is with you constantly. Anyone relate?
I look forward to hearing from you all. It helps to know I am not alone.
sherrie
sherrie (lithrlnd@midwest.net)
USA - Monday, November 01, 1999 at 19:43:15 (EST)Sara, Your mail is still being returned, has anyone else tried to e-mail her? TJ
Tj
USA - Monday, November 01, 1999 at 14:42:55 (EST)Further to my earlier account, my husband has also reported shooting pains behind his eyes - perhaps totally unrelated to MDD; has anyone experienced this? Also, for anyone who wishes to contact me direct please note my NEW email address which should hopefully be easier to access than the previous one!
Sara Attanasio (sara@networx.net.au)
PERTH, WA AUSTRALIA - Sunday, October 31, 1999 at 06:42:18 (EST)Hi! I've been checking in on this web site since I was diagonoised with MDD in August of this year. I was out on our pontoon boat over the 4th of July weekend, and the water was pretty rough. I lucked out that the ENT that I saw knew immediately that it was MDD. I can't work though, the more I try to concentrate the harder it is to stay focused. I tried going back to work, but somehow when your swaying around someones head while your trying to cut there hair makes them a little nervous (and me too) I wish that I felt better when I'm driving a car, I don't- I feel like my head is made of glass and it's hollow and there'e air blowing through it. I do take Elavil and that helps somewhat. It's nice to know that there'e others that feel this way too..........Thanks
Debbie (Deberoo@Mailcity.com)
MI USA - Wednesday, October 27, 1999 at 23:48:57 (EDT)Has anybody seen a Dr of Osteopath whom does the manipulations? If so please email me. Thanks. Betty
Betty (dbjoseph@g2a.net)
wi USA - Tuesday, October 26, 1999 at 13:43:43 (EDT)Looking back I guess Ive never went into short detail about how my symtoms came about.It started on a sunday night in Nov. I felt dizzy. I had my husband take me to the E.R. The doc said it was an ear infection. I went to work the next day. After I got home from work I felt even worse off balance. I worked at an elevator office weighing grain trucks. It was an elevated trailor, And I used a computor to weigh them. I was happy, loved my job, Just bought a new home, Everything was great. Well I went to doc after doc trying to get answers. I was very healthy. They detected some damage to my inner ear, Not much though."Its stress, Its anxiety, Its depresion". So since this started Ive had so much testing, They found graves disease,Starting of glaucoma, and of course anxiety. They killed off my thyroid gland and I take drops for the glaucoma. And I will be having a hysterectomy Nov.5th and my gallbladder removed. Ive been having alot of shooting pain in my ears lately.I can watch movies but when they are done Im realy dizzy. The computor bothers me if Im on to long. I think it must be eye related if we all have problems with movies and computor.Im 34 and mother of three and a wonderful husband and family.And I wont let this kill my spirit!~ Bless you all~ Cathy
Cathy (Hedrick@decaturnet.com)
decatur, In USA - Monday, October 25, 1999 at 00:40:34 (EDT)Looking back I guess Ive never went into short detail about how my symtoms came about.It started on a sunday night in Nov. I felt dizzy. I had my husband take me to the E.R. The doc said it was an ear infection. I went to work the next day. After I got home from work I felt even worse off balance. I worked at an elevator office weighing grain trucks. It was an elevated trailor, And I used a computor to weigh them. I was happy, loved my job, Just bought a new home, Everything was great. Well I went to doc after doc trying to get answers. I was very healthy. They detected some damage to my inner ear, Not much though."Its stress, Its anxiety, Its depresion". So since this started Ive had so much testing, They found graves disease,Starting of glaucoma, and of course anxiety. They killed off my thyroid gland and I take drops for the glaucoma. And I will be having a hysterectomy Nov.5th and my gallbladder removed. Ive been having alot of shooting pain in my ears lately.I can watch movies but when they are done Im realy dizzy. The computor bothers me if Im on to long. I think it must be eye related if we all have problems with movies and computor.Im 34 and mother of three and a wonderful husband and family.And I wont let this kill my spirit!~ Bless you all~ Cathy
Cathy (Hedrick@decaturnet.com)
decatur, In USA - Monday, October 25, 1999 at 00:38:34 (EDT)Sara,
Your mail is coming back as undeliverable, check your address please. TJ
TJ
USA - Sunday, October 24, 1999 at 20:06:44 (EDT)I am writing on behalf of my husband (27 years old) who has experienced a range of symptoms for the past 2 years or so.
He has not consulted doctors intensively, but the research that I have done on the internet seems to indicate that Mdd is what the problem might be.
When the dizziness first occurred (not as a result of air or sea travel strangely enough), the doctor prescribed Serc (Betadihistine - not available in US as I understand) for her diagnosis of vertigo. I don't think that it was very helpful, although it was difficult to tell because the symptoms came and went.
The longest 'attack' probably lasted 2 months or so. My husband struggled at work (he is mostly office-bound, under fluorescent lights and speaks on the telephone for much of the day - not helpful I'm sure!) during this period, but managed to cope alright as the symptoms subsided. They have gradually lessened over this period, although they still come and go, but with less intensity. The original dizziness gave way to a strange pendulum-like sensation; perhaps this is the rocking/swaying I have read about. Other sensations he experiences include strange perception ie, when he is moving stationary objects appear to move also - as if the normal perception of movement is highly exaggerated. All of the sensations are worse at night or in situations where there is less light. Although conversely, I have noticed that he becomes quite distressed when we are in a supermarket aisle (for example - increased visual stimulus, very bright fluorescent lighting, noise etc)and sweats profusely. It seems to create a panic-attack situation and he wants to leave the shop immediately.
Additionally, he will experience a 'spaced-out' feeling, and has complained of a fullness in the head (something like the beginning of a headache which does not develop - perhaps the 'g-forces' sensations I have read about). Today, he suffered a headache (proper) which subsided to one side of the head and concentrated in one spot (as Kelley described, and TJ, as I recall). This was combined with dizziness and fatigue.
In retrospect, the symptoms seem to have declined as his personal situation has improved. When the symptoms were at their worst, he was under a great deal of stress, although we did not really see this as relevant at the time.
In terms of precipitating the condition, there was only one occasion where the symptoms were exacerbated by a 'common' stimulus - a slow 7 hour boat trip on average-swell seas. However, all of the other attacks seemed to occur out of the blue. Swimming (freestyle) seems to be a problem, but we can't ascertain what else might trigger the symptoms. I remembered another - computer games; a virtual-reality type of visual situation. They do seem to affect him quite badly.
In the early days, my husband found that travelling in the car would relieve the symptoms (so we used a lot of petrol!). Exercise was nearly impossible because it made him feel so awful.
He is now exercising every day which I am sure is helpful somehow (even if it only reduces stress).
That is all I can think of for the moment. Some of the other accounts sound absolutely debilitating; I hope an effective relief is found very soon. Till next time (if I am not in trouble for taking up too much room!)
Sara Attanasio (sattanasio@hotmail.com.au)
Perth, WA AUSTRALIA - Sunday, October 24, 1999 at 10:25:00 (EDT)I am writing on behalf of my husband (27 years old) who has experienced a range of symptoms for the past 2 years or so.
He has not consulted doctors intensively, but the research that I have done on the internet seems to indicate that Mdd is what the problem might be.
When the dizziness first occurred (not as a result of air or sea travel strangely enough), the doctor prescribed Serc (Betadihistine - not available in US as I understand) for her diagnosis of vertigo. I don't think that it was very helpful, although it was difficult to tell because the symptoms came and went.
The longest 'attack' probably lasted 2 months or so. My husband struggled at work (he is mostly office-bound, under fluorescent lights and speaks on the telephone for much of the day - not helpful I'm sure!) during this period, but managed to cope alright as the symptoms subsided. They have gradually lessened over this period, although they still come and go, but with less intensity. The original dizziness gave way to a strange pendulum-like sensation; perhaps this is the rocking/swaying I have read about. Other sensations he experiences include strange perception ie, when he is moving stationary objects appear to move also - as if the normal perception of movement is highly exaggerated. All of the sensations are worse at night or in situations where there is less light. Although conversely, I have noticed that he becomes quite distressed when we are in a supermarket aisle (for example - increased visual stimulus, very bright fluorescent lighting, noise etc)and sweats profusely. It seems to create a panic-attack situation and he wants to leave the shop immediately.
Additionally, he will experience a 'spaced-out' feeling, and has complained of a fullness in the head (something like the beginning of a headache which does not develop - perhaps the 'g-forces' sensations I have read about). Today, he suffered a headache (proper) which subsided to one side of the head and concentrated in one spot (as Kelley described, and TJ, as I recall). This was combined with dizziness and fatigue.
In retrospect, the symptoms seem to have declined as his personal situation has improved. When the symptoms were at their worst, he was under a great deal of stress, although we did not really see this as relevant at the time.
In terms of precipitating the condition, there was only one occasion where the symptoms were exacerbated by a 'common' stimulus - a slow 7 hour boat trip on average-swell seas. However, all of the other attacks seemed to occur out of the blue. Swimming (freestyle) seems to be a problem, but we can't ascertain what else might trigger the symptoms.
In the early days, my husband found that travelling in the car would relieve the symptoms (so we used a lot of petrol!). Exercise was nearly impossible because it made him feel so awful.
He is now exercising every day which I am sure is helpful somehow (even if it only reduces stress).
That is all I can think of for the moment. Some of the other accounts sound absolutely debilitating; I hope an effective relief is found very soon. Till next time (if I am not in trouble for taking up too much room!)
Sara Attanasio (sattanasio@hotmail.com.au)
Perth, WA AUSTRALIA - Sunday, October 24, 1999 at 10:05:43 (EDT)Lynn and all, I take 0.5 milligrams of klonopin 3 times a day, I started with half a tablet and the ENT told me the 0.5 was as he could give me. I am also not doing as well as I would like but the one time I stopped It was much worse. Let me know how you are doing. Take care . Ann
Ann C.
USA - Thursday, October 21, 1999 at 15:27:29 (EDT)This is to Ann and anyone taking klonopin. How much do you take? I have been taking only 1 milligram a day and I am starting to feel lousy again. Did you ever have to up the dose after a while? I don't want to take more but I think I may have to. I sure notice that when I am over-exerting myself or stressed out that it is worse. Anyone else feel that way? Take care everyone and I would appreciate any comments.---Lynn
Lynn (Follfam@aol.com)
USA - Thursday, October 21, 1999 at 11:08:36 (EDT)Hi Suzanne,Thank you for writing about your experiences with MDD, I just finished writing you and the computer ate my words so I will make this brief. I also had a severe attack of vertigo before the MDD began and was also under a great deal of stress I had thought it might have had something to do with it, but it had been so long ago I don't know, but I think you have a very good idea and I thing we should all search for any clue that might help. I do take Klonopin and it has saved my sanity. Thank you again for writing and best of luck to you and everyone else on the forum. Take care, Ann
Ann
USA - Wednesday, October 20, 1999 at 10:25:40 (EDT)Yes, I also have a clogged, pulsating feeling in my left ear although it
is a fairly new symptom. What is interesting to me is that my symptoms
began after an acute attack of classic vertigo. After treatment with
Valium and meclizine, the Vertigo style dizziness went away but the swaying
began. I went to the doctor a couple of times and they found no fluid in
my ears or anyother clue to my problem. Even the neurologist after my
MRI said "It's an inner ear disturbance, it will go away." I'd had it
off and on for 2 years for crying out loud, and now it's been another
almost 4. I do believe something happened to my inner ear when I had the
vertigo though but none of the doctors gave any thought to that. The one
thing that seems to permeate all the statements I have read has been
sleep and stress. All I can say is that this is probably a huge factor
in the development of the disorder not just the increase/decrease of
symptoms. Any way that we can take the weight of the world off our
shoulders will help all of us. And any way we can take the weight of the
world off the shoulders of others may even prevent them from coming down
with the same thing. My question is, how many of us would say that we
are "worriers" or had a period of extreme long lasting stress in their
lives prior to the onset of their symptoms? It would be interesting to
consider the role of stress in the breakdown of our vestibular systems
in the first place.
Any comments?
Suzanne
Suzanne Martin (jeffsuz@wa.freei.net)
wa USA - Monday, October 18, 1999 at 20:51:11 (EDT)In reading through all of the comments and emails from the support group, it seems a majority of us have "clogged" or a fullness sensation in our ears. Does this involve the eustacian tubes? Has anyone asked Dr. Hain or other doctors about the fullness sensation in the ears. This must be connected to the MDD in some way.
Linda McKenna (LndMcKenna@aol.com)
Stony Brook, NY USA - Monday, October 18, 1999 at 20:33:20 (EDT)This is to Van Fleet: I am sure we all appreciate your help, but what you have is different than MDD. My mother had the same as you and was cured in a day also. I wish it was that easy. But what most of us are suffering from doesn't involve calcium deposits. We either have actual inner ear damage from something or it was brought on by motion like a cruise or airplane ride as in my case and our balance and inner ears cannot adjust back to normal. Most of us have tried everything and have had no luck..but thanks for your thoughts, we are always open for suggestions.
Lynn (Follfam@aol.com)
USA - Wednesday, October 13, 1999 at 15:44:37 (EDT)I came upon this website accidentally - and it reminded me how fortunate I
am to have gotten cured of this disorder. Seven years ago my ENT suggested
that I have a "positioning treatment" (can't recall what he called it) at
a hospital outpatient clinic. The staff would alternately lay me down and
set me up, alternately pouring cold water or warm water into the ears. I am
fairly sophisticated re. medicine -- thus I thought everyone was nuts! BUT
the vertigo went away immed. and has never returned. Explanation given:
microscopic calcium(?) deposits inside inner ear fall into fluid and cause
"motion sickness" or vertigo. In some people, this hot-cold filling of ears
will cause temp. shrinkage of tissue, move the deposits back onto sides of
canal. With nothing floating in fluid, you have no dizziness/vertigo. For
me it worked. It was fast, painless, inexpensive. I feel so fortunate!
VanFleet (vanfleet1@home.com)
Phoenix, AZ USA - Monday, October 11, 1999 at 11:59:21 (EDT)I have been a six year MDD veteran. Recently my symptoms have increased a bit due to job pressures and not getting restful sleep. It seems that if I have seven great hours of sleep my MDD symptoms are much better. Ginger tablets seem to help. My ENT physician, Dr. Coale of West Linn, Oregon recommended to walk on a flat surface focusing on the horizon. Actually this walking exercise does help. My other comment is with the cold and flu season coming....to drink green tea and take a garlic pill every day.
I have had good sucess the past few winters avoiding colds and the flu by drinking green tea and taking garlic. I say this because when I have had cold symptoms the MDD is wild! Best wishes to you all and God Bless!
Arnold Bunting (abunting@juno.com)
Oregon City, Or USA - Saturday, October 09, 1999 at 00:58:41 (EDT)It is so nice to find this website. It is better than any medication or herb! You cannot put a price on peace of mind, and it is so nice to see that my symtoms are "normal" and actually a part of something. The severity of my symtoms come and go, but they are still here again after my last 3 day cruise on September 1. It is the second time it happened, but the first time I actually knew it was MDD, and it wasn't a doctor's diagnosis (although my ENT confirmed it)... it was my own after reading this website and realizing that my symtoms and MDD were one and the same! I would like to know more about the nutritional support (what to eat and what to avoid) and which herbs and minerals help everyone. Thanks. Ugie
Ugie (ugie@cdepot.net)
Jackson, CA USA - Wednesday, October 06, 1999 at 09:49:53 (EDT)Hello Everyone,
This pressure in the head to me is more like a fullness, needing to pop my ears all the time, like going up and down mountains all day long. Except for this strange ache at the top every now and then. I take a generic Klonopin three times a day, every eight hours, it really helps. There seems to be so many more people writing in. I sure wish we could all get some health proffessional to do another study. What do you think Evan? Where is Dr Hain now? Is there just not anything new here, since the study? Just more people? If we only knew... Well, Welcome back Cathy, hope this finds you having a good day, God Bless Everyone.........TJ
TJ (P-TIVEY@prodigy.net)
Huntsville , AL USA - Monday, October 04, 1999 at 12:22:41 (EDT)This is for Dave also. I have tried all the natural alternatives like ginger and ginko biloba...no luck. My only sanity is a drug called klonopin. I only take 1mg. a day and it helps a great deal. I would suggest seeing an ENT and a neurologist but you will probably find that they find nothing wrong with you that they can cure. So you have joined the rest of us. Good luck....take care everyone.
Lynn (Follfam@aol.com)
USA - Saturday, October 02, 1999 at 18:08:25 (EDT)Hi Dave, Welcome to the club. Sorry, not funny. My suggestion would be to see an ENT and be sure he or she specializes in balance problems. I am on a medication that helps me but does not cure it entirely. However I can cope now but before I had to hold on to the counters to cook, walk,etc. the medication I take can be addictive to I don't want to encourage it unless you have no other alternative. In my case, it has saved my sanity and given me hope. I do hope you can find a good doctor. Good luck and let me know how things go. Take care, Ann
Ann Criss
USA - Friday, October 01, 1999 at 15:18:19 (EDT)I was on a 7 night cruise to Alaska that ended on September 6, 1999 followed by an extremely long plane trip back to New York immediately following the disembarkment from the ship. I had about 3 days of the classic MDD balance/dizziness feelings after I got off the ship. After 2 or 3 weeks without any symptoms, the damned MDD balance/dizziness problems returned in earnest. It seems to hit me me the hardest while seated at my desk. I almost feel I am going to tip over. Once I get up and walk around the feeling seems to abate somewhat. Since my job is at a desk, I'm beginning to get somewhat concerned. Does anyobne have any recommendations as to exercises, drug therapy, type of doctors I should consult if these symtoms persist? Thanks, Dave Stein,AxiomNYC@Aol.Com
Dave Stein (AxiomNYC@aol.com)
NY, NY USA - Friday, October 01, 1999 at 12:23:12 (EDT)Hello all I finally got my own computor so I have an e-mail address now for you all that would like to write. I still am off balance and riding the waves. I hate it!!!!! Love to you all.......Cathy
Cathy (Hedrick@decaturnet.com)
Indiana USA - Friday, September 24, 1999 at 21:36:23 (EDT)Kelley, I meant to add that I also have noticed that my head does have certain feelings of pressure, more like my scalp crawling which I suppose could be attributed to nerves. It's hard to describe but just wanted to add that. Take care.
Ann
USA - Wednesday, September 22, 1999 at 10:18:16 (EDT)This is to Kelley...I also get alot of weird pressures in my head. It drives me crazy. But I also have had tension head-aches for about 5 years. So I never know if it is that or if it is the MDD. I am approaching the 1 year mark with this and I still can't believe I have it yet. My neurologist thought it would be gone after 6 months....so much for that idea. Good luck to all of us.
Lynn (Follfam@aol.com)
Green Bay, Wi USA - Wednesday, September 22, 1999 at 10:08:44 (EDT)Kelley,
I get this pressure pain at the top of my head, in the middle, just to the left of the center part. Never noticed it before the swaying started. I think about it only occasionally because after the MRI I quit worring that I had a brain tumor. Nothing showed up so the doctors thought nothing of the pain. Have you asked any medical professional about it?
TJ (tj@ro.com)
Huntsville, AL USA - Tuesday, September 21, 1999 at 18:43:03 (EDT)WHen is this going to go away! I am so sick of it. I've had this off
and on (but for more on than off) for almost three years now! I'm only 20.
I don't want to have to live with this for the rest of my life.
Sorry, just had to vent there......
I was just wondering if anyone ever experiences periods of discomfort in
their neck and head. Sometimes I feel like there is a lot of pressure
inside my head, at points on the very top of my head. Does this happen
to anyone else.
Just wondering, Thanks,
Kelley
Kelley Shinabarger (kelleysh@spu.edu)
Kirkland, WA USA - Monday, September 20, 1999 at 17:02:28 (EDT)Hey, this one's for Dody. I too had a bout of severe vertigo prior to
any symptoms. I was on Valium and oh I can't remember what else, for
about 3 weeks. But the rocking was pretty much there right after
the spinning was gone, if I recall correctly. I'm not exactly sure,
I had a baby and a 3 year old when it all began so it's kind of a blur.
I too often wondered if the vertigo was related. My doctor said "inner
ear disturbance" I've been waiting for it to go away for 5 years. (I don't
have it constantly though, thank the Lord!)
Suzanne (jeffsuz@wa.freei.net)
USA - Friday, September 17, 1999 at 20:51:15 (EDT)Hi Everyone -- It's been some time since I've posted comments to this
board. I came down with MDD in February of 1997 after several long plane
trips and three 0ne-day boat trips on severly choppy conditions. I did
just about what everyone else has done - appointments with ENT (there's
nothing more he can do), testing (everything's normal), medications (Valium,
transderm patches, myclizine, etc.) However, about 3 months ago I started the
vestibular exercises. They are wonderful. I now go weeks without symptoms.
If I do a lot of travelling or skip doing them, the symptoms reoccur. I feel
severe arthritis in both knees caused worse symptoms. I had them both replaced
Sept 14 1998. There's been a definite lessening of the symptoms since then.
The exercises truly bring my to a normal life.
Judy Sayrs (jsayrs@worldnet.att.net)
Milwaukee, WI USA - Friday, September 17, 1999 at 09:50:13 (EDT)I found out a short time ago from my pharmasist that decongestants can dilate the pupils in the eyes. They do not efect every one this way but I happened to notice mine were after taking them for a couple of days . this dilation made my rocking symptoms worse. Just thought I woulld pass this along.......TJ
TJ
USA - Sunday, September 12, 1999 at 16:32:33 (EDT)I just found out about this web site today. It is interesting to read about the rest of you and how everyone is coping with this MDD>
I have had this MDD now for 3 months. I have the "rocking" but not the dizzyness. I got MDD from a 3 day cruise. It was actually fairly smooth water and no one got sick. The meds don't seem to really help, except for the Transderm patch and they just soften the rocking. I had my 2nd physical therapy treatment today. In spite of a bus trip going bad a few days ago, I did do better on the exercises. Betty
Betty (silkribbon@aol.com)
OR USA - Tuesday, September 07, 1999 at 19:25:03 (EDT)I just found this page, and it sure sounds like what I have. I was driving home from the store in April, and wham got this rocking dizzy feeling and it hasn't gone away yet. Interestingly though, I did have a bout of vertigo (spins) in Nov 1998, Dr said a virus, it slowly got better, after three weeks completely gone and I was back to work. No spins since then, so I don't know if related. I do have constant dizzy or rocking or floating feeling. I tell my family, the boat is really rocking today. Although I don't recall any long trip near the time it started. I did take a short plane flight in March and a long car ride the same month. Anyway, I have seen an ENT, had some ear tests, where they put cold and warm air, right side showed 18% weak, but still normal, but that could be problem. But my Mom had acoustic neuroma twice (brain tumor) so they did MRI and that was normal fortunately. Anyway, antivert doesn't help at all, ativan helps function better, but I can't take that alot, habit forming. Vestibular therapy is helping me, so I will continue and hope this goes away. I drive when I have too, but have gotten more dizzy driving, cause when I am still is when its worse. Watching t.v. sometimes makes it worse. At night when I lay down its worse. Morning is better, when I wake up, so I take my time getting up. Also I do have a thyroid disease I was diagnosed with last year and take thyroid med, and paxil for that. But was told not related. I have had thyroid checked continually thru this and change in that med didn't help. I will try walking next.
Thanks for such a great forum. Also I don't work out of the home. I was a realtor, but got out, couldn't hold down a job. So I do some stuff at my home office, but can't go the same pace I used to. Anyone with any comments or help, feel free to email me.
Dody Fuhrmann (DodyF@msn.com)
Meridian , ID USA - Monday, August 30, 1999 at 18:49:30 (EDT)Holy cow!!! Guess I got a little carried away. That post is LONG!!!! Next time, I promise a shorter one : )
Mary (Mtr1225@aol.com)
Columbia , MD USA - Sunday, August 29, 1999 at 23:49:08 (EDT)Hello once again all you good people. It's been a while since I have posted so I thought I would share with you my latest updates. Basically the update is..... I still have no new answers since I last wrote. I had an MRI a few weeks ago now. Results were normal. My ENT says he no longer knows what to do for me. The ENG test I had showed that my responses to the optical part of that test were abnormal as in I failed that part of the test. This is what led the ENT to order the MRI (geesh talk about alphabet soup!!) He said the ENG results showed him that it was not an inner ear problem, that my "balance center" responded normally (this baffles me seeing as I have no balance) and that it was a central nervous problem. I have called my neurologist (the second one I have seen now) to see what she might suggest as a next step, but we are in a fierce game of phone tag.. Meanwhile, I am continuing with the vestibular therapy program and that IS helping me. My balance is improving, slowly but surely, although it still seems like a long ways from normal. My therapist is the only one who has ever mentioned MDD to me and she is pretty certain it's what I have. Why I have not been able to get an official diagnosis from two neurologists, an ENT and my primary, is a puzzle to me. None of them had ever heard of MDD.
I have never had a symptom-free day in the almost three months since I took the 2 hr cruise and began feeling like this. Some days are better than others. As many others have posted, I seem to feel the rocking/swaying sensation more when there is a lot going on around me (house full of company, crowded museum) and when I am under a great deal of stress. As a news reporter on tight deadlines. this happens often! But I love my job and it keeps me sane. I have not missed any work. My vestib. therapist says I should force myself to be in crowds. I am supposed to be challenging my self she says by doing things that force the dizzyness to occur. Still seems strange to me, but like I said, the program is helping. I have some home exercises to do and I am now practicing my balance in all sorts of places (standing on line at the grocery store check out for example, or standing in back of church when I was too late to get a seat : ) ).
I am getting ready to take a short vacation on Cape Cod and am contemplating going on a whale watching tour or taking the ferry over to Martha's Vineyard, both of which I have done numerous times in the past prior to all of this with no problems at all. I have read and heard that some people have felt their best when they were back on a boat again. My therapist said it was up to me if I wanted to give it a shot. I am ready to try anything and will try the ginger tablets too. If anyone has any feedback on being on a boat again and the ginger, I would greatly appreciate hearing from you. Also, has anyone seen any of the specialists at Hopkins and had any success? They are located not too far from me and I am considering exploring that avenue. Welcome all emails. Thanks for allowing me to share . You are all in my thoughts and prayers.
Fondly,
Mary
Mtr1225@aol.com
Mary (Mtr1225@aol.com)
Columbia, MD USA - Sunday, August 29, 1999 at 23:44:14 (EDT)Hi
A big thanks to everyone who has emailed me since I put my origignal message on the site
I have had one week taking ginger tablets and I can't believe th difference. The doctor I am seeing
is reluctant to prescribe valium so I went to the local health food store for ginger. I am also taking
St Johns Wort to help with anxiety, I feel miles better. When I don't take the ginger the
symptoms come back so I know it's working. Keep your spirits up everyone, there is hope.
Take care, Anna
Anna Garrett (annajgarrett@hotmail.com)
christchurch, New Zealand - Friday, August 27, 1999 at 20:56:15 (EDT)Cathy,
Today was the first day I've come to this page of the MDD site. I'd
like to email you but you never include your address. I too am a Christian
mom (age 34) and thought we might be able to encourage one another.
suzanne (jeffsuz@wa.freei.net)
USA - Wednesday, August 25, 1999 at 12:58:55 (EDT)Can anyone relate to the following?
My symptoms started after a severe bout of classic vertigo about 5 1/2
years ago. After a week on valium and about 2 weeks on meclizine I was
feeling better but was rocking. The rocking has come and gone but isn't
just provoked by motion (mostly car or train) but also by things like
ceiling fans, busy shopping malls, stadiums with lots of people, even
looking at the mountains from close up. I also tend to feel my pulse
strongly in my head and feel like my head is moving with the pulse.
Sometimes I start spinning as I fall asleep and have to wake up and try
again. My friend's grandmother has Meniere's disease and her symptoms are
similar but the Meniere's website makes me think MDD is what it is and not
Meneire's.
Also, I have tried Gingko but it didn't seem to have any effect. Is
it possible I should have taken more? How much is effective?
Also, to the gal whose doctor didn't think she had a dizziness problem,
I would say get a different doctor. YOU know if you have a balance problem
and he should listen to you. After all, you pay him, right?
Suzanne (jeffsuz@wa.freei.net)
USA - Wednesday, August 25, 1999 at 12:37:35 (EDT)Does anyone experience heavy, weak legs with this syndrome?
Sherrie (lithrlnd@midwest.net)
USA - Sunday, August 22, 1999 at 12:14:39 (EDT)Hello everyone! Having experienced intermittent symptoms of MDD since the beginning of January after a 7-day cruise, I am writing to say that my prayers are being answered. The sense of rocking on a floor that rolled like ocean waves has passed almost entirely. The fog and heaviness in my head occur less frequently, as does the nausea. Every time I have changed my diet, improvement has been noticeable. By avoiding carbohydrates--sugar, pasta, potatoes and bread--I have enjoyed periods of almost symptom-free living. When I slip back into the old habits, especially drinking soda and eating sugary snacks, the symptoms return. I know many MDD sufferers have heard from doctors and therapists that diet has nothing to do with this disorder, which may indeed be true. But in my case, there is a direct correlation between how I feel and whether I indulge in high-carbohydrate foods. It might just be worth a try. No one can say how the vestibular system works, but water retention and sugar intake affect many aspects of health. I pray that a positive change in lifestyle may make an important difference for you.
Leslie
Leslie Goerner (ggoerner@dreamscape.com)
Utica, NY USA - Monday, August 16, 1999 at 23:20:00 (EDT)Hello everyone. I was recently diagnosed with MDD after "rocking" for two months, but without having taken a trip of any kind. It just began spontaneously. I find that if I wake up with it in the morning, I'm "cooked" for the day. Constantly rocking. Sometimes, mercifully, I don't wake up with it, and it comes on later on in the day, and gets progressively worse toward evening with no let up until I fall asleep. My major concern is my job. I am alone, self-supporting, and I love my job. I am incredibly stubborn and I feel that if I give in to this and take time off from work, "IT" will control me. I would VERY MUCH LOVE to hear from folks who have persisted in their work while they "rock and roll". As I said, it's been 2 months of constant rocking for me, but I would rather rock at work and have demands put on me which force me to focus away from the rocking, than to be at home and focus constantly on the rocking. I think I would surely lose my mind. Oh, by the way, in my case, I'm ok as long as I keep moving, - the faster the better! Once I sit still, it's all over, the floor starts moving and I'm on my "ride" again. I know that some people's MDD is worse than other people's, by psychologically right now, I really need to hear some success stories....about how people have remained tenatious and have stayed in their jobs despite "rocking and rolling". Please write me if this fits you! Thank you all SO much! Kathy
Kathy (Lyrics3@aol.com)
Boston, MA USA - Saturday, August 14, 1999 at 00:41:46 (EDT)Thank you, Evan for hosting this site. I too was overjoyed to find it, while scrolling down from BPV. When I saw Mal de Debarquement, I finally knew what I had. even before I started reading. I fit the profile. 69, female, 7 day cruise. Had a great time, calm seas, no seasickness, but I am ready for it to be over. When I read how some of you have been feeling this way for years, and years, I get scared. I would hope that all the current readers will let us know when they improve. surely someone must get over it, don't they? I have had all the tests, hearing, ENT, MRI, a little Chiropractic, and have not yet met anyone, except all of you, who has ever heard of MDD.I am fine while driving,but don't walk down a street straight. I think I am a little dizzier immediately after a massage, but have not, thank goodness, felt the rocking while trying to get to sleep.I have flown once since April, with no ill effects. Before leaving on the cruise I had a VERY bad cold, with lots of coughing. did get a prescription for Zithromax which I finished taking while on the ship. Had a couple of tough landings on the way home, used Afrin and did a lot of swallowing to keep my ears from exploding. the next day I went into the Dr, I was worried about driving, received the antivert Rx, and was told it could take a long time to go away. Ha! I had no idea he meant this long. So, I'm just trying to stay positive and healthy. If you find yourself walking straight, don't forget to come back and tell us! Thanks for all your sharing.
Barb Buchanan (buchanan@parkcompany.com)
Fargo, ND USA - Friday, August 06, 1999 at 17:16:13 (EDT)I cannot believe that it has taken 19 years to identify what I've been dealing with but thank g-d I found this page and all of the other information on MDD. The symptoms are mine to the "T" and have existed since I am 17 (I am now 36). That's some long boat ride. I don't recall if my symptoms started right after a cruise or air travel because it is so long ago that they started and I would not have made the connection back then but it is very likely because I did take my first cruise with my family when I was in high school. My symptoms started by coming and going over a period of a week or two until one day when I looked out into the auditorium waiting for a play rehearsal that I felt as if I was on a boat. I've felt that way ever since, it has never gone away. It is hard to believe that I am rocking and rolling for more than half my life. There are periods that it is somewhat less intense but it is constantly there. I had been to numerous doctors over those early years and nobody could understand what I was telling them. I've hdd every ear test and an MRI. One Dr. diagnosed BPV and everyone else said it was stress. I developed panic attacks and an anxiety disorder so bad that I was agoraphobic for about a year. Then everyone was really sure it was in my head. My family has been supportive but never really grasped the reality of my condition. They still don't seem to understand that it is constant. After not getting any help and thinking that I was the only one like this in the world I just decided to get on with my life the best I can. It surely is a major disturbance but I have managed to get through college and graduate school, hold a professional career and have a rewarding marriage with a supportive husband. I have continued to travel and have been on six cruises with these symptoms and I actually feel best when I am on a boat as if I'm almost normal and don't feel any worse after. I also travel by air a great deal for work and that has not worsened things for me. I have also been put out with general anesthesia for minor surgery and did not get affected in any way. My feelings range from feeling as if I am on a ferris wheel to having a windstorm in my brain. Some nights I feel as if the bed is rocking beneath me in an earthquake. Concentrating is hard sometimes but sleeping is the worst. When I lie down the room really rolls and when I close my eyes I feel as if I am spinning. My respite is sleep when I can get it cause I don't sleep well but I do not dream dizzy. In my dreams I am stable and at peace. It is constantly there although I have had better days than others. Every few years since it all began I have tried to see new doctors hoping that new tests and research would help determine what I have. Just a few months ago I felt as if I was having many more bad days than better ones and started the whole process all over again. I have been seeing a doctor who is considered to be one of the best and am getting a new test done called a computerized posturography that my insurance does not cover. I suspect that will be negative too but my doc may then have me try vestibular therapy at the Rusk Institute at NYU. I see by some postings that that has helped some and not others. I do not believe in medicating a condition I believe in treating a cause so I have always been adverse to drugs and turned them down. I found that driving makes me feel better as does keeping an active aerobic exercise routine. I don't drink and if I did it makes things worse as does lack of sleep, late nights, large social gatherings with lots of people, smoke and noise and the darkness. If I sit at one place too long it is pretty bad too. As long as I keep moving I feel better and notice it less. Movies and TV also keep me distracted. My fear is no longer that I will live with this the rest of my life since I have a feeling it may stick around I just don't want it to get worse and I think my last ENG aggravated it. I would like to try acupuncture and herbs. I do go to a chiropractor which helps my neck and shoulder aches but not the dizziness. I took tai chi but that did not alleviate the rolling feeling but helped me to relax. I try to meditate but it's hard to when I feel as though I'm rolling around. My most pressing concern right now is that I am considering getting pregnant and am petrified of what that could do. I wonder if anyone out there has been pregnant with this condition?
Lily (llg@mrcisretail.com)
harrington park, nj USA - Wednesday, August 04, 1999 at 14:56:21 (EDT)Hello All,
Against all odds, I am taking my trip of a lifetime . My MDD got
so bad I could no longer concentrate and had to leave my demanding job.
I decided instead of letting this control me any longer I was going
to fight it with everything I have and the one thing that keeps getting
me sick is travel so that is exactly what I am doing.
I am two months into a six month journey through southeast asia. So far
I have traveled by airplane, five kinds of boats, cars, pick-up trucks,
motorcycles, motobikes, trekking, all kinds of tuk tuks, rickshaws. And
except for walking I get sicker after getting off each one.
I am hoping that by constantly provoking my MDD it will eventually get
tired of trying to control me and go away. Unfortunatly it hasn't
agreed with me and is hanging on for dear life.
I have stopped taking all drugs, but am getting so sick sometimes that
instead of going out I have to lay in a guest house bed all day and sleep
I tried most of the drugs you have all mentioned with the exception of
Klonopin. If someone who has had success with this could write to me
and let me know the proper dossages I should be able to pick some up over
here. Also, let me know if it is known under any other names. Thanks
in advance.
So keep up hope. We all can and will fight and eventually get ride of this
constant ocean journey.
So far I have been to Northen Thailand, Laos, Vietnam and Cambodia. I am
heading for Southern Thailand now where I will thankfully be able to
lay on a beach for a couple of days straight without having to travel. Of
course to get there I have a 15 hour bus ride and then a four hour boat
ride to look forward to so once I'm there all I'll be able to manage is to
sleep on the beach. But hey, if your gonna be sick, you might as well do
it in style!
Nancy Mulligan (nancymulligan@hotmail.com)
San Diego, Ca USA - Sunday, August 01, 1999 at 23:07:53 (EDT)Hi, I should have introduced myself. I'm a New Zealander living in the UK.
I have not been diagnosed officially as having MDD although it seems to fit
my symptoms. I first noticed the rocking sensation after arriving on a 27
hour flight from NZ. Shortly after this I noticed a stiffness in neck and
shoulders and a heaviness in my head. I have difficulty concentrating and
suffer from many types of headaches, especially a tingling/burning sensation
on the top of my head. Various things make it worse such as if I have late
nights. Drinking alcohol makes the dizziness go away but the next day it is
much worse, does anyone else find this?. Looking at patterned floors is
really difficult, they almost seem to warp in front of my eyes. I notice the
dizziness a lot when going upstairs or in the shower or standing over the
sink or basin. Can anyone relate to this? I'd love to hear from anyone in
London who is feeling the same way, I often feel that people don't believe
the way I'm feeling.
Anna Garrett (annajgarrett@hotmail.com)
London, United Kingdom - Friday, July 30, 1999 at 10:55:56 (EDT)Does anyone feel as if they are disassociated with their hands and feet. When the rocking is bad I often feel almost as if I'm floating, it's very hard to describe. This seems to be worse when it is hot.
Anna Garrett (annajgarrett@hotmail.com)
London, United Kingdom - Friday, July 30, 1999 at 10:38:59 (EDT)Just wondering if this heat is bothering you all? My head goes crazy when
I go outside. It feels very heavy and I get a lot of sudden dizziness like
I described in my previous comment (elevator dropping)
Sherrie (lithrlnd@midwest.net)
USA - Monday, July 26, 1999 at 21:10:12 (EDT)Hello Dizzy Friends
I have just recently been diagnosed with MDD after suffering with it since 1991
I am trying the exercises and was wondering if anyone else has had any
luck with these. Most of the time I do the exercises they do not produce
the symptoms -- any one else relate to this?
Here are my symptoms -- would like to hear from anyone else that has any
of these.
My head feels "Heavy" most of the time -- like it is full of lead.
I get sudden spells of dizziness that feel like an elevator dropping.
I have extreme fatigue most all the time.
When sitting still I feel like my head is slightly rocking back and forth.
Also, when the symptoms are bad, my legs feel strangly weak -- anyone else
relate to this???
Please write if you can relate as I am always wondering if I have the right
diagnosis. Also, I got MDD without ever going on any kind of trip?????
sherrie (lithrlnd@midwest.net)
USA - Monday, July 26, 1999 at 21:05:12 (EDT)My stint with MDD began at the end of February after a 48 hour boat cruise.
I have been "rock and roll" free for the last two weeks after doing about 8
weeks of physical therapy for vertigo. I would highly recommend that if you
have the chance to try this, go for it. It made the symptoms worse for the first
few weeks and then it gradually faded away. I did not take any medication
except for a short trial of Antivert which we all know didn't help.
I think that I was able to re-train my inner ear after only 8 weeks because I did
not have MDD very long. I am hoping it will stay gone after my next travel.
I would be happy to explain to anyone what therapy the ENT had me do. I don't
know if the therapy would be the same for everyone but it is something that anyone
could do. Keep smiling
Nan
Nan Morris (puga@bewellnet.com)
Kiowa, co USA - Friday, July 16, 1999 at 13:33:41 (EDT)Greetings to all and a heart-felt thanks for sharing. I just found out about this site and it is providing a sense of comfort in knowing I am not alone. I was on a two-hour dance cruise a month ago and have felt like I was on the boat ever since. The floor swaying and rocking motion is constant, except when I drive. That is my only reprieve. A neurologist said I had benign positional vertigo, put me on antivert for two weeks with no results and recommended vestibular rehab. . I am now into my second week of rehab. The sessions wear me out but my physical therapist says to expect that. My balance has been thrown out the window. I haven't felt like my normal wacky fun lovin' self since this all began. What I would like to hear some feedback on is three-fold. 1) should I see an ENT? 2) What is this drug kenopine (sp?) I asked the neurologist to put me on something else.. ANYTHING to stop the rocking and she said there was nothing she could do and 3) will plane travel make me feel worse and negate any progress I am making with the rehab? I am due to take a short flight at the end of the month, but I don't mind cancelling it if it means helping me get back to my sanity at a faster rate. Thanks in advance for your posts or emails. Pax et bonum (peace and all good things) Mary
Mary (Mtr1225@aol.com)
Columbia , MD USA - Monday, July 12, 1999 at 02:40:41 (EDT)I am frustrated with my care provider in that she doesn't think I have a problem with dizziness, and boat rocking. 2 months ago, I went in to see the doctor about this constant rocking motion and being dizzy all the time. There is also the ear ringing and memory loss. I have asked to see an ENT to see if they could help. The doctor felt I was not giving the protrytomine a chance to work. I started taking the medication 2 months ago. I also started taking antinhol? for blood pressure problems. What I would desperatly like to ask is, How do you communicate with the doctor that you know something is not right when I rock constantly and feel like I have been on a boat for years. The doctor has ran blood tests and states I have no diseases and to wait it out. Can anyone help me. I am so very tired of this feeling and it is starting to affect my work.
sharon Kallenberger (sharden@livecomm.com)
ridgefield, wa USA - Friday, July 09, 1999 at 20:48:34 (EDT)I also have been diagnosed with MDD. I have had the symptoms of rocking for six years. I went on a cruise in 1993 and have been "on the seas" since that time. Walking on a flat surface and focusing on the horizon has been of benefit to me. I have not taken any prescribed drugs at this point, except for a trial of Lasix, several years ago prescribed by my ENT physician. Regarding the warm weather, I feel that it is very important that us MDD folks drink plenty of fluids...and of course a good night's sleep always seems to help. I do take a garlic pill and a vitiamin E pill
every day. I do this to avoid coming down with a respiratory infection.
The worse part of MDD is when I have respiratory infection symptoms.
Arnold Bunting (buntinga@juno.com)
Oregon City, Or USA - Friday, June 25, 1999 at 12:22:16 (EDT)I have read all 58 pages on the forum and just want to say thank you all for sharing your cases. It really does help to know you are not alone and that you are not crazy. I just want to add that although klonopin has been the best help I've had, it does not keep me from feeling terrible after trips, even very short ones. We have had to go out of town 2 weekends in a row and it has taken awhile to adjust. I still believe in it but as I said before, it is no cure all. I thank you, Evan, for doing this forum. You just need a shoulder sometimes. Take care, everyone. Ann
Ann Criss (fcriss@network-one.com)
Corinth, MS USA - Sunday, June 20, 1999 at 20:26:38 (EDT)I should also note that I've just added a link to the abstract of Dr Timothy Hain's most recent article which appeared in the Archives of Otolaryngology journal. You can find it on the Current Knowledge page.
Evan Torrie (torrie@etete.com)
Stanford, CA USA - Saturday, June 19, 1999 at 18:12:23 (EDT)Anne, when I go traveling with scopolamine patches (Transderm is the trademarked name), I always leave the patches on overnight, and preferably the full 2-3 days that they're supposed to be effective. I've found that it really helps.
Evan Torrie (torrie@etete.com)
Stanford, CA USA - Saturday, June 19, 1999 at 18:10:10 (EDT)After rereading the comment I just sent, I realized that I misspelled my email address - it's bgrrl68, not bgrll68. Sorry bout that - still getting used to being on line. Thanks
Beth Kasner (bgrrl68@aol.com)
coral gables, fl USA - Friday, June 18, 1999 at 22:34:15 (EDT)I was diagnosed with MDD in Oct 1998 - initial onset occured in May 1997. I had 2 mild episodes, each lasting a month, and then, BOOM! In JUly 1998, full blown symptoms so bad that I had to quit working (I'm a massage therapist - severe dizzines and nausea made my life very difficult to practice). Since then, the MDD is under better control, but I have seasonal problems with severe insomnia ( I think it's that brutal miami heat during the summer). The MDD is a little more pronounced in the heat, but that may be due to the stress of sleep deprivation. Does anyone else have insomnia? I would love to hear how you're dealing with it. I am trying to negotiate a move to the pacific northwest (possibly San Fran or
Eugene, OR) to see if the change in weather helps. When not sleep deprived I have been able to combat MDD with excersise (walking, step aerobics, weight lifting), Healthy diet, and positive attitude. It helps that my vestibular specialist has been so understanding (Ronald Tusa, head of the dizzines and balance disorder center at Bascom Palmer). I would enjoy hearing from anyone who wants to compare notes - I'm just an email away! I know how hard it is to stay positive - I've been feeling so lousy lately and it's very discouraging (frightening, too) - but keep the faith evryone.
Beth Kasner (bgrll68@aol.com)
Coral Gables, FL USA - Friday, June 18, 1999 at 22:25:00 (EDT)I am beginning to think I have MDD and am looking for some feedback from others who have experienced the same problem. I have already seen 2 ENTs who were not able to help much, and my audiogram, ENG and ABR tests all came back normal. Has anyone had success with a specialist in New Jersey? Many thanks...
Alissa Koval-Dhaliwal (akoval@njcu.edu)
Weehawken, NJ USA - Tuesday, June 15, 1999 at 11:38:56 (EDT)I was wondering if anyone has ever had surgery and been put under general anethesia and then found their MDD to be worse? I was doing great on .75milligrams of klonopin a day and then I had minor surgery and the MDD is back somewhat. Also does the hot weather or doing active work make it worse for anyone? I found this to be the case with me. I would appreciate any comments. Thanks and take care all.
Lynn (Follfam@aol.com)
Wi USA - Tuesday, June 01, 1999 at 16:46:00 (EDT)I have good news. My MDD started November 11 while I was on the 5th day of a 7 day cruise. I had all the usual testing such as an ENG, MRI, Rotary Chair test, and cat scans. The oto neurologist (both an ENT and neurologist I saw, finally sent me to vestibular therapy in Feb 99. She introduced me to this web site. I found the vestibular therapy helpful in helping me accomodate to my constant rocking. I was able to walk again as a result of this and drive in a somewhat limited capacity. The computer was still an impossible task, however, I did get voice activated software through Dragon systems which helped me to maintain my employment.
Good news, In April, I started acupuncture through the Integrative Medicine Dept of George Washington University Hospital in Washington, DC. This is a new dept that utilizes alternative therapies such as acumpuncture, Reiki, herbalists, chiropractors, meditation, nutritionists etc under supervision of an MD. After the fourth acupuncture visit I immediately went on a 3 hr plan trip, using 1 clonazepam, Afrin 12 hour nasal spray, and EAR Planes ear plugs to relieve the pressure. Since my trip, after 6 months of misery, I am on the road to recovery. The herbalist also has me drinking a high protein -24 gram soy protein drink for breakfast. I'm hoping that this is it. I am now a believer in acupuncture, since I could feel it starting to work the first time. It takes a while so don't give up. She called it wind in the head-a good analogy don't you think. Good luck to all.
Barbara Blistein (lenjblis@aol. com)
Herndon, VA USA - Sunday, May 30, 1999 at 23:14:13 (EDT)Some time ago there was discussion on the listserv about an over-the-counter
anti-nausea drug called Sturgeron--over-the-counter in Britain that is. I
got some and held it in reserve. I have been using Scopolamine patches
to prevent MDD episodes and they have so far worked, but this last trip I
took the patch off when I got into the airport--big mistake! within 2 hours
I began rocking and rolling, then I took two of the Sturgeron tablets and
within a half-hour the rocking had abated and never did develop. But man
were the side effects strong--dry throat, stunned-ox dullness, etc.--
similar to the side effects of Scop but much more concentrated. Anyway, if
anyone also uses Scopolamine as a deterent, how long after travel do you
leave the patch on? Next time I will leave it on at least 5 hrs. after
de-planing, just to be on the safe side, even tho it makes me very drowsy.
Any other ideas about prevention would be great to hear.
Regards, Anne Kelly
Anne Kelly (akelly@bpl.org)
Boston, MA USA - Wednesday, May 26, 1999 at 11:10:48 (EDT)I feel like the baby of the family having only had MDD symptoms for 3 months.
Luckily, I work for a doctor who didn't believe I was crazy and sent me to
an ENT who specializes in vertigo. I was diagnoised with only an MRI and
3 hours of testing by the ENT.
I would like input from anyone who has tried physical activity to deal with the
symptoms. I work out with weights 2-3 times a week, do yoga once a week and tae
bo twice a week. I am hesitant to get back on my roller blades but since I
also feel best when I am driving, I may break out the pads and try it.
I would like to avoid medication so if anyone has any activities that helped
alleviate your symptoms I would love to hear about them.
I feel that working up a good sweat helps temporarily and once during yoga,
I felt fluid move around way back in my ears(head?) and I had great balance
that class. It only lasted for 3 hours after class.
Thanks for the help.
Nan
Nan (puga@bewellnet.com)
kiowa, co USA - Sunday, May 23, 1999 at 10:02:36 (EDT)I have read most of the comments on this page,and the mdd support page,and it would appear that in a large proportion of the suffers,the condition first became apparent after either plane or ship travel.My condition was neither,but manifested itself spontaneously.I consider myself fortunate(after reading about others)that my condition does not rear its ugly head more often than once every three months,but does tend to stay for up to three weeks,also I have been able to control it,more or less,with a drug called serc,but I am also interested in some of the other drugs mentioned.
My one anxiety is that at the end of this year,my family and I will be visiting your wonderful country and after reading some of the comments on travel I am having severe doubts.
If anyone would like to e-mail me with comments or advice please feel free and accept my thanks.
Gary Broomham (broomham@shoal.net.au)
Barrack Heights, Australia - Saturday, May 22, 1999 at 12:11:54 (EDT)While I never got on a boat, plane, train, bus or ufo, I, nontheless, have been diagnosed with MDD. I have all the symptoms. I identify. I am currently taking klonopin in wee doses and to no avail. I continue to rock and roll. My symptoms have intensified due to a sinus infection. Woe. Rock, roll and drip. I also am extremely sensitive to vibrations. Parking garages tip me over the edge. Can anyone relate?
Through happenstance, I stumbled upon this web page. Reading the experiences of others has helped me greatly. I now know more about this condition than my physician. So much for the Mayo Clinic. Thanks for being here.
Betty Brown (bcduffbrwn@aol.com)
Scottsdale, AZ USA - Wednesday, May 19, 1999 at 22:34:30 (EDT)I need some info on SCOPALMINE and can't find anything on it! If anyone can help me out e-mail me at xleisuhx@hotmail.com. Thanks!
Lisa Frantz (xleisuhx@hotmail.com)
Oroville, Ca USA - Wednesday, May 19, 1999 at 14:04:35 (EDT)I've had the rocking sensation after plane trips and recently after a car trip. It would last 4 to 6 weeks and, while not severe, really tired me out so I didn't want to do much except what I had to do. An ENT doctor diagnosed some possible inner-ear damage when I wanted some help prior to a recent overseas plane trip. He suggested taking decongestants the day before and the day of travel and Dramamine the day of and day after trip. That worked, but I remembered someone mentioned ginger. I tried it a few days later when I discovered that bus travel was a problem. The ginger was a miracle cure for me. I could actually feel the earth seem to "settle" under my feet, and that happened pretty quickly after taking the capsules. I tried vertigo medicine years ago but that had just made me tired, and the side- and after-effects of the Sudafed and Dramamine (drowsiness) were hard to cope with. During and after my recent trip, I took 3 to 4 capsules (approx. 500 mg each, I think) every 4 to 6 hours, and only had to take a couple of doses after each bus trip and after the plane trip. I noticed no bad effects from the ginger either (except a little burning in the stomach if I didn't take it with food.) Hope this works for others. If there are any scientific studies on this, I'd appreciate having the information passed on to me. Thanks.
Eileen Beran (eileen_beran@mcgraw-hill.com)
Minneapolis, MN USA - Friday, May 14, 1999 at 11:27:17 (EDT)Has anyone been suffering from TMJ disorder and pain? Many of the symptoms are the same for MDD and TMJ. For example, TMJ affects more women than men. Then there are the headaches, dizziness or vertigo that are common. Please write to me on my email address. Thanks!
Margaret Nissen (MrsNissen@AOL.com)
Arvada, CO USA - Wednesday, May 12, 1999 at 21:11:35 (EDT)I have also started taking klonopin. I take .75milligrams at night. What a huge difference! Life is much better. I don't feel the motion at all anymore. I would suggest trying this. I have tried everything else and this is all that has worked for me this well. Take care everyone.
Lynn (Follfam@aol.com)
Wi USA - Monday, May 10, 1999 at 10:25:58 (EDT)To Ann and all,
The klonopin has helped me so much also, I tried getting off of it to see if I was still dizzy.......well, right back on it, but, if I had not been dizzy, I don't think that it would have been a problem to stop taking it.. Try it. Take Dr. Hain's report to your doctors.....let them read it. Just remember everyone is human, and doctors especially have no time to sit in front of the computer with every patient that comes in! I just paraise God I found this site! TJ
TJ (tj@ro.com)
Huntsville, AL USA - Saturday, May 08, 1999 at 09:07:55 (EDT)Evan Torrie, I submitted my case history in December 1997 through a friend's computer capability. Just perused your page (2 years later) and wondered why my case history was not there. Want to confirm that you received. Do you edit and/or only publish certain case histories? Please see current e mail address courtesy of Arizona friends. My current mailing address is 3410 Capella Dr., El Paso, TX. Should I resubmit my case history? I wish to be assured that I am plugged into this site so that I may be aware of valuable new information re this condition.
Nancy C. Wall (ccruz@speedchoice.com)
El Paso, TX USA - Friday, April 30, 1999 at 23:42:35 (EDT)Hello Everyone: I am new to this forum. After suffering from dizziness (worse after trips) for three years, I decided to try to find out what I had. I feel lucky to have found this forum. My symptoms sound so much like many of your experiences. Well, I just saw an ENT on Wed.; after observing me walk with my eyes closed, etc. he said that he did not see a balance problem. (So why do I feel like the ground is swaying???) He said that my symptoms are probably produced by stress, and he didn't even mention MDD. I am to go in for an ENG soon, and I have a feeling that nothing will show up there either. I am wondering if I should forget about the expensive ENT visits, and just try to deal with my symptoms using alternative therapies. Anyone have any positive experiences with alternatives to share? I am also wondering if anyone has recurring ear pain with MDD. About every 2-3 weeks, I get a bad earache (just in my left ear.) It only lasts for one day, and then it goes away. Again, the ENT found no ear infection and attributes the earaches to stress (I know stress can do a number on my immune system, but this ear pain seems too local and specific to be just stress.) I would love to hear from someone who has ear pain to see what you've experienced (w/symptoms and doctors.) Thanks for listening! ANN
Ann Heintzelman (heintzelman@hotmail.com)
Muncie, IN USA - Sunday, April 25, 1999 at 09:45:36 (EDT)I would like to thank all that have shared their symptoms and other problems with fellow sufferers of mdd. I have had trouble with dizziness since I was in my thirties. That has been over thirty years but only in the last 7 or 8 years have I had the sensation of unbalance and rocking that so many of you describe so well. The feeling of walking on a trampoline was one of my descriptions to my family, though I have never been on one. The main thing I would like to say, is I went through all the doctors,including family, Internal medicine, ENT, and Neurologist. Finally I found an ENT that told me what it was within ten minutes. He Prescribed Klopin and saved my sanity. I realize it is an addictive medicine but at myage it is worth it. I stopped taking it at one time after he told me how but I could tell all the difference when I stopped. Needless to say, I told him I was ready to keep taking the Klonopin. I may not be for everyone but it is great just to have someone to share with when you have such a weird problem. By the way, I have never been on a cruise, except down the Mississippi for a few miles. God Bless all. Ann
Ann Criss (fcriss@network-one.com)
Corinth , MS USA - Thursday, April 22, 1999 at 20:37:03 (EDT)I haven't visited this site for a while as I am trying to heal myself from this dreadful problem and don't want to focus too much on it. I had Labrynthitis, vertigo, bad tinnitus, loss of balance and all the other MDD syptoms. The latest naturopath said too much 'heat' in the liver is the cause of Menier's disease and it's symptoms. Has anyone had any experience with this - also going on special diets - no junk foods. Allergies? I would appreciate any feedback.
Annette Cohen (cohen@orac.net.au)
Canberra, Australia - Thursday, April 22, 1999 at 04:24:39 (EDT)Has anyone been on ativan or valium for a long period of time to help control this mdd problem? What does your doctor think about this? I am on 4 days of vertigoheel and not feeling any different. How lond does it take to work? I would appreciate any comments. Thanks.
Lynn (Follfam@aol.com)
Green Bay, Wi USA - Monday, April 05, 1999 at 11:58:43 (EDT)I'm sorry for asking but what do you do I mean whats your site all about because I'm doing a report on Gueina Pigs and I ended up on your page.
bobbiejo (bobbiejo@smtpgate.wellpinit.wednet.edu)
spokane, wa USA - Tuesday, March 30, 1999 at 14:42:02 (EST)Hi. I just finished reading all the comments in the MDD forum and feel that
maybe this is what I have been suffering from since May 1997. I have not
been diagnosed with this but rather labyrinthitis. However, no other condition
that I have read dealing with the inner ear describes as closely the
symptoms as does MDD. The problem began not immediately after a cruise but
approx. 6 weeks later. I was sitting at my computer at work , went to
look outside and the earth shifted. This startled me and I stood up and
had the same thing happen. I felt really dizzy and I
I had to grab a counter to avoid falling or
the feeling that I was going to fall anyhow. Then this quickly developed
into a chronic unsteady feeling of disequilibrium, or a state of drunkeness.
I saw my GP who told me to go home and listen to relaxation tapes (I was
not in a state of anxiety when this developed) then an ENT (as I had fullness
in my ears and some ear pain) but he could not
diagnose but gave me a prescription of Lorazepam which did nothing.
I had him refer me to a neurologist who did balance tests including
caloric testing. This test is done lying on your back and it had the
effect of making me feel like I was going to rotate over and flop onto
the floor. The conclusion I was given was that I have labyrinthitis.
The neurologist did not know what had caused it and said it would probablyu
go away in a year. Well its almost two years and I still have it.
Recently I had a panic attack at work (probably caused at least in part
by working all this time and a severe allergic reaction I had to Niacin)
and so I saw my Dr. and asked for Ativan. It
seemed to help my disequilibrium as well as anxiety. I had a really bad headache during
this time and so also took Dristan pills that I had found in the past
had helped my headaches.
The combination of Dristan and and Ativan made me feel good. Even Dristan
alone despite the drownsiness took away most of the disequilibrium. The
problem is that I cannot take these two forever so I am desperate to
try to find something that helps that is non addicting, drowsy etc.
I do not have the problems while driving. I had a terrible time in the
first few months in the bathroom with running water or doing dishes.
I had to hang onto the sink for fear of falling. I have
noted one other person on the forum that described this same problem with water. It
has made me feel like I am not going crazy.
I also get this feeling in my head when I try to concentrate too long,
like it is going to blow up, this full feeling. It happens when I read
too long or work on the computer too long.
If anyone can help me please send me an emial. This is such a debilitating
problem. I am going to try ginger and ginko but if anyone else has had
similar symptoms please please send me a note. Thank-you.
Carole Fleetham (carole_fleetham@bc.sympatico.ca)
Canada - Monday, March 29, 1999 at 23:54:38 (EST)HI yes i have been doing the vestibular therapy for about 6 weeks and at the onset of the therapy you do feel alittle worse but that shows your body trying to adapt and I do feel it has helped . has it stopped no. but the horrible feeling of dropping for a spllit second in mid air happens so infrequently now I dont remember last time and the neasea has eased up. so I do believe it helps. also I am trying to be active . believe it or not i went to a wedding last sat eve and i dance for 2 hrs . I went wild and felt alive again . and i didnt feel worse the next day Just tired. but not wavier. I also went to a homeopath last week and she will be sending me a remedy in the mail. Ill let you know how it works. i did try vertigo heel a homeopathic drug that s by rX . yourdr has to prescribe and its in the pdr. and I do bellieve it helped cause when i got off it got alittle wavier. but the homeopath wanted to make a taylor made remedy for me . so well see. take care and God bless Rosanne
Rosanne Jensen (rowzanne @aol.com)
knoxville , tn USA - Monday, March 29, 1999 at 19:42:49 (EST)Hello again--Please excuse my many questions! Has anyone been to physical rehabilitation for MDD? If so, did your therapist use habituation? This is a process that tries to reproduce symptoms of the disorder so that the body will gradually "habituate" itself to dizziness, blurred vision, etc., until problems lessen and disappear. I am eager to hear about whether this popular approach works for MDD. Also, any stories about effects of travel since your diagnosis with MDD would be much appreciated. Thanks in advance!
Leslie
USA - Tuesday, March 23, 1999 at 12:53:40 (EST)Has diet been a focus of attention for any of you? I find that both caffeine and sugar cause an immediate onset of symptoms. On one website dedicated to vestibular problems, sugar was listed as a potential problem. When I tried a very low carbohydrate diet, the results were impressive. Hopefully this might be helpful information.
Leslie
USA - Monday, March 22, 1999 at 16:21:29 (EST)Traveling again? As you may remember my MDD came on with motion rides in Gatlinburg and Pigeon forge TN. I would love to see my Grandmother in CA, who is not traveling as much as she used to. So what about it......has anyone traveled since the onset of MDD? My husband says I am not going anywhere!!! He is aftaid it will get worse. I can't see how it can be much worse. I thought I may as well go. If I ever do get over this I may be afraid to go in fear of getting it again. How about posting your experences on the forum. I have seen the coments of taking Ginger and Valium and such to lesson the feelings while traveling, but how do you feel when you get home? Help!!!!......wanting to fly West.....TJ
TJ (PSI TJI@aol.com)
Huntsville, AL USA - Friday, March 19, 1999 at 19:02:52 (EST)Has anyone been successful with alternative forms of therapy, such as accupuncture. If anyone lives in the DC metro area and have had success with alternative treatments and know the names of practitioners in this area treating MDD, please let me know. I am currently exploring the Integrative Medicine Department at GW University hospital, which offers alternative treatment. My MDD started while on a seven day cruise in November, 98. I have seen an otoneurologist and am taking vastibular physical therapy. To date, nothing has helped.
Barbara (lenjblis@aol.com)
Herndon, VA USA - Thursday, March 18, 1999 at 21:30:40 (EST)This comment is for Leslie. My neurologist thinks that if you use the patch or other means of motion sickness drugs along with valium before you travel or take a cruise that it may help to lessen the problems of mdd because the valium works on the central nervous system. He thinks it may prevent the mdd from happening. A couple of ent doctors thought the same thing. I have not went any where to try this yet, but good luck. Also has anyone experienced ear pain along with this mdd? My ears often ache alot. Thanks and good luck to everyone.
Lynn (Follfam@aol.com)
Green Bay, Wi USA - Wednesday, March 17, 1999 at 13:42:57 (EST)Many thanks to those of you who have responded to various concerns! This website really makes a difference. Because my family has booked a cruise for July, I'd like to ask for your comments on travel and MDD. Have you traveled since your diagnosis? Did your symptoms worsen? What did you do to offset a possible increase of symptoms or degree of intensity? No one can give a definitive answer, I realize. But the comments on this website have helped more than anything else to understand the syndrome. Without this site, my CAT scan today that thankfully showed normal brain function would be just the beginning of a long series of tests and doctors. As the Lord would have it, the young technologist who administered the scan had experienced MDD-like symptoms following her own recent cruise. She now has the name of the syndrome and information on where do look for support if she needs it. As so many of you have already stated, this service is truly a blessing!--Thanks in advance for your help.
Leslie
Leslie
USA - Wednesday, March 17, 1999 at 13:12:35 (EST)I've had these MDD symptoms since January 1996. They started out gradually and
increased over a 2 to 3 month period. For the first about year and a half,
I'd rock back and forth 5 to 6 times and then I'd take a drop like an
elevator going down fast and jerking to a stop. That dropping and jerking
has stopped. Now I just wave back and forth like you would when standing
on a floating dock. It's been three years, I still have this problem but
it has lessened. It does get worse if I'm under stress, tired or working
to hard. Since the symptoms have lessened maybe there is hope that
someday it will stop and I'll know and remember what it's like to be
still inside again. May that day come for all of us.
Anne Grant (bagrant@gte.net)
Plano, TX USA - Wednesday, March 17, 1999 at 11:04:54 (EST)Hi! Collecting data for this new (to me) phenomenon, I was given an article by my doctor on a possible cure for vertigo. The principle is that by inducing dizziness through tilting the head several times from side to side, 30 seconds for each side, the increase of vertigo will gradually create an "overload" to the system. The body will then react by not responding. I've been wondering whether others have found their condition to worsen after repeated experiences of aggravating motion. Judging by comments on this website, avoidance doesn't seem to be helping. For me, after a cruise in January, the problem seemed to be subsiding. But now the symptoms are returning without provocation. -- Also, does anyone else experience an increase in dizziness when exposed to fluorescent lighting? If so, might tinted glasses help? It seems we are the anecdotal documentation for this syndrome. Might as well be creative...! Whatever the circumstance, at all times "our help is in the Name of the Lord."
G Goerner (ggoerner@dreamscape.com)
New Hartford, NY USA - Saturday, March 13, 1999 at 15:50:29 (EST)hi to all of you my friends who like me are suffering in silence.well im going to tell you about my illness,it started 2days after an airplain travel .i had severe vertigo,i was so scare i thought i was having a strock .iwent to emergency ,they have no idea what i have .they thougt i had dehydraation .so i so my dr he order mri ,it turn out negative ,so he send me to neuro surgeon who said he never heard of my symtoms ,he said depression and give prozac well it help little bit becauseit change brain chemistry .my insurance rfuse to pay for prozac.next step was ent dr ,who gave antibiotic and anti anflammatory drug.so when i went to store i saw a magazine that said when dizziness is a sign of trouble there when i got vestibular disorder assosiation ,they sent me everything i need to know ,i took all the documents to my ent ,then he said i may have vestibular probleme.then my pcp send to ucla ,the doctor performe all the test i need mri eng blood work everything normal except the hearing test in the right ear was damaged so he put in low salt diet no sugar and take meclizine only if i have an attak or valium because is vestibular suppressant.and a year later i still have vertigo and lightheadedness spcialy around my pre menstruel period ,i get very lightheaded and dizzy .im going to start physical therapy next month ,i hope it will work if not ,i will try some other alternative .meanwil i am taking vitamin ,ginsing ginco biloba and ginger the seem to help ,i go walking to school to bring my son its hard but ihave to keep going ,i do low impact aerobic ,i get dizzy but they said in order for your brain to adjust you have to keep moving ,the hard part is depression that came after mdd ,im trying to go get conceling that may help .to all of you my friends one day well be free of all of this . janet
janet (lash@ecom.net)
canyon country, ca USA - Thursday, March 11, 1999 at 23:43:35 (EST)HI what is the product motion ease is it a drug or homeopathic. i am scared of any drugs since thats what got me into this bout of mdd. the drs said that the paxil i was on suppressed the central nervous system and it couldnt balance me out like it normally should and then when i got off it went haywire and here i am worse than any boat or plane ride after affects . has any one done accupunture for this i have read in the mineres book that of the people with it after 3 sessions were cured of dizziness and if it could help the horror of mineres could it help us . thanks for the help please write Rosanne
Rosanne jensen (row zanne @ aol.com)
knoxville , tn USA - Thursday, March 11, 1999 at 14:18:53 (EST)I was diagnosed with MDD two years ago. The source was a vestibular neuritis 15 years ago, that left me with only 15% function of my middle ear. Unlike many it seems, I had very good results over time from working with physical therapists who specialized in vestibular problems at Mass. General Hospital.
Now,I have mixed feelings, but intend to go sailing this summer. Sailing and travel are lifelong passions for my husband and me. I feel the need to find out if I can without loosing all my equilibrium again. I have a bottle of MotionEze on order, and have found a book that provides useful exercises for all of us as we get older and particularly those of us with balance disorders. It is How to Prevent Falls: A Comprehensive Guide to Better Balance, by Betty Perkins-Carpenter. After reading it, I have given it to my 87 y.o. mother and ordered another copy for me via Amazon.com. All suggestions appreciated.
I wish things were different for all of us with balance problems. Take care, Carrie
Carrie
Ma USA - Wednesday, March 10, 1999 at 14:11:20 (EST)Has anyone tried any of the magnetic energy bands? How about the handheld energy pulsers that send a little zap of enery?
Julia (djr53@aol.com)
USA - Wednesday, March 10, 1999 at 11:31:06 (EST)This is wonderful, I feel 'validated' as my counselor says! I will take this diagnosis to my PCP and see if he's ever heard of it. My first experience with this was on a trip to Chicago from NH. After a Sunday flight I went on a 90 minute windjammer trip Wednesday and noticed that long after I got off the boat I still felt the rocking. It was fairly mild but after it continued for a couple of weeks I went to the doctor and got the diagnosis of depression (sound familiar?). After a course of Zoloft which did nothing but give me diarrhea it gradually went away on its own.
The second time was after during a trip to Disney World. Four days into the trip (and after a kayak and airboat adventure) I was trying to shop in the Disney Marketplace when I got that familiar feeling back. This time it was accompanied by fatigue and confusion. Back home went to an ENT who did an ENG, diagnosed a peripheral weakness and prescribed vestibular rehab. Since the PT could not induce dizzyness (it was just always there) we both agreed the exercises probably would not help, and she recommended a neurologist. By this time I was experiencing what so many others have reported, difficulty concentrating, memory problems, trouble finding the right word, etc and lots of fatigue. This affected my job because I have a fairly technical position and could not always do the thinking required. My PCP said before we go the neurologist route let's try Lorazepam, which helped my brain work but made my body stop moving! We cut the dose in half and it worked just fine. I found that caffeine definitely makes it worse, it goes away while driving, and Tai Chi seems to help while I'm doing it, although my balance isn't the greatest.
I'd be particularly interested to hear what other people do to prevent a recurrence when they know they'll be flying. At the end of this month I will be taking a trip to China to study Tai Chi, and it would be great if I could hold it off. I will definitely try gingko and ginger, as they seem pretty safe.
Thanks for all of your sharing!
Ann
Ann (massinghams@acornworld.net)
NH USA - Monday, March 08, 1999 at 15:52:56 (EST)Leslie asked about traveling since the onset of MDD. I love to travel and I love cruising.
Having suffered on and off for about 10 years with something that had no name (until I recently),
I refuse to put my life on hold.
I have found that taking decongestant (I use Tavist-D) for several days before, during
and after a trip helps to lessen the MDD symptoms. This was the advise from an ENT doctors
who said it is a result of flying while I have a cold although did not diagnos MDD which I am sure it is now.
I have done this for the last 5 years or so and the MDD seems to not be so bad.
It will last only 2 or 3 weeks instead of months and be fairly mild.
Try it.
Angie Strainic (strainic@now-online.com)
Cleveland, OH USA - Tuesday, March 02, 1999 at 13:12:56 (EST)The computer really bothers me. I think because of the suddle "blinking" in the screen. A friend told me that laptops have a diffent kind of screen that doesn't refresh all the time and it would be easier to try and use. Does anyone know anything about this or have any tips on how to stay on the computer for more than five minutes without the world starting to rock? Any advise would be appreciated.
Happy Days! Nancy
Nancy Mulligan (nancymulligan@hotmail.com)
San Diego, Ca USA - Tuesday, March 02, 1999 at 02:10:39 (EST)Hi! Has anyone gone on another cruise after the onset of MDD? Knowing what is wrong, is it possible to prevent a possible increase of symptoms? I'd be grateful for any information. This website is a real blessing!
Leslie Goerner (lgoerner@mvcc.edu)
- Monday, March 01, 1999 at 22:52:33 (EST)Hi again everyone, I made a mistake in my previous notation. You need to find a chiropractor who is a post graduate in neurology under the Frederick Carrick program from St. Cloud, Florida.(not Minnesota) I hope this can help some of you. Thanks.
Lynn (Follfam@aol.com)
Green Bay, Wi USA - Saturday, February 27, 1999 at 22:54:38 (EST)I have had this mdd for 3 months now and I finally think things are getting better.I have been taking an herbal drug by Biochem called Circulation Factors. It has many of the things in it that are needed for us mdd sufferers. I have also been seeing a chiropractor who is a post graduate in Neurology under the Frederick Carrick program from St. Cloud, Minnesota. This type of chiropractor is trained in neurology and is very helpful for mdd/vertigo problems. I seem to be getting better after seeing him for 2 weeks now.(3 times a week)You might want to give this a try. Take care everyone.
Lynn (Follfam@aol.com)
Green Bay, Wi USA - Saturday, February 27, 1999 at 22:48:52 (EST)Hello everyone:
I see that there are a lot more people finding this web site. Last time I wrote was last Sept. We all have the same symptoms in varying degrees. I have had some plane rides since Sept. I do come home not feeling good. My rocking (by the way a true body rocking, swaying) is a very gently sway unless I have low blood sugar, get very tired, drink too much caffeine. I have been taking Valerian (combo with Passiflora, magnesium) and this makes my symptoms lessen. I usually take Ginko every day for my eyesight. But will take it for this along with Ginger to see if it helps. The next thing I am going to try is those magnetic earrings. I keep studying MDD and its causes, and possibly magnets will make the crystals do the right thing in the inner ear. The air pressure in the airplane, plus trying to sleep or walk for 14 hours, put a real strain on my balance system. It has been 10 months now. Nothing really stops the symptoms, but some things help or make me feel better like walking, driving in a car, taking Valerian, resting. I did go to the medical doctor finally. She was an expert and said it was MDD after tests. The physical therapy has not helped. The doctor prescribed Elavil, but I did not take it because of the side effects. By the way, I have signed up at Talkcity, but so far nobody has been in the Chat room. Is there a certain time for this?
Regards,
Margaret Nissen
Margaret Nissen (margaretnissen@hotmail.com)
Arvada, CO USA - Wednesday, February 24, 1999 at 18:41:03 (EST)I would like to hear from anyone who has/had this condition that was NOT caused by traveling. I have had MDD for 10 years or so, although no doctor has ever diagnosed it as that. In the past, it has always be after flying or a cruise. Now, I have it again but I haven't traveled. It just came out of nowhere. Has anyone else had this experience? I am glad to finally have a name for it and a possible remedy that is not a drug, but with no apparent cause, I am even more concerned.
Thanks for your help!
Angie Strainic (strainic@now-online.com)
Mentor, OH USA - Wednesday, February 24, 1999 at 12:06:18 (EST)I have been "rocking" since a 4 day cruise to the Bahamas 8 weeks ago. As with everyone else, I am so grateful to have found this site. Ginko and Ginger help me quite a bit. I take two capsuls of each three times a day.
Julia (DJR53@aol.com)
USA - Tuesday, February 23, 1999 at 21:26:16 (EST)Hi. I'm new to this group. I've been experiencing symptoms of MDD (rocking and swaying, and feeling "spaced out") for a month now, following a 5-day cruise to the Bahamas in January. My symptoms began to appear after I go off the ship at the end of the cruise. They got much worse the following day, after the plane ride back home. I'll be seeing an otolaryngologist (ear, nose & throat specialist) in a few days, just to rule out any other inner-ear disorders, but I'm convinced that MDD is the correct diagnosis. I spoke to a neurologist from work(I work in a major teaching/research medical center) who also confirmed that my symptoms point to MDD. After reading the MDD info on this site, I have started taking ginko and ginger (I tried scopalmine, antivert and valium - none worked). How much ginko and ginger (what dose and how often) seem to work for others?? What brands of these herbs work best? Thanks in advance for any advice!
Dina (dinamarkow@aol.com)
Rochester, NY USA - Saturday, February 20, 1999 at 15:58:10 (EST)I relized yesterday that the gocart ride that I blamed all this on was just the tail end of a day of motion rides. I put it in the survey, and forgot to share it here. We took a van up the mountain to Gatlinburg, TN, from Pigeon Forge. Got on the tram, to the ski chair lifts, down the alpine slide, back down the tram, down the mountain in the van then to the go carts. Five or six hours of motion. I have just returned from the doctor, he was interested, took copies, put me on Klonapin which Dr Hain, seemed to have the best results. So we will see. I have had some positive results from the Ginko and Ginger, The Ginger I bought said to take three, three times a day, they are 535 mg. each. I have not received results from my Mirtal Valve Prolapse tests. Has anyone else been tested for this? Or Dys auto nomia? Which I understand is just meaning your central Nervous syatem does not function right. Which seems pretty obvious none of ours do. Looking forward to the Chat tonight. Hope to meet some more people. Anyone heard from Veejay lately, our sympotoms seem real semilar. Talk to you tonight, hopefully. TJ
TJ (TJI PSI)
Huntsville , AL USA - Thursday, February 18, 1999 at 15:11:18 (EST)Can anyone tell me what is currently going on at Northwestern Universsity and MDD?
TJ (TJI PSI@aol.com)
Huntsville , AL USA - Thursday, February 18, 1999 at 10:42:29 (EST)Evan, Thank you for this site. I have just sat down and read them all from bottom to top. I have just diagnosed myself. I have another appointment with my family doctor Thursday,I plan to take this info with me. They are testing me now for Mitral Valve Prolapse. Does any one have this condition along with their MDD? I have read that MVP can cause symptoms as severe as these. I am a 38 year old mother of two, who homeschools, volenteers at church, used to work part time as a crossing guard for the city in the busiest intersection in town, loved helping others and thrived on being busy........until! I truly cried when I found your site, stumbling on it after looking at everything else associated with ( inner ear balance disorder) The doctors have not given up on me but have put me on antidepressents, since nothing else was helping. I consented, because the way I was feeling was making me depredssed. I described it to them as "I feel like I am walking on a tight trampoline" Huh? Three doctors so far and none of them have heard of such a thing. Well it seems there are others, I hate being in stores, I have a fullness feeling in my ears like I am driving up a mountain all day. I have to "pop" them constintly. If I can't get them to pop, I am worse. I may try this candling, I will ask my doctor, trying it myself scares me. If my son is sitting on the couch next to rocking back and forth, "Oh, please stop" Well you have all heard this before, I am off to the store for some Ginger, also, Talking to the doctor about Valiumsound good too. What does Valium do to you mentally? Does it have side effects? Will I still be able to function. Right now I will try anything, just to stop the trampoline! I never could swing or get on a rollercoaster growing up, they always made me sick. Gocart? Dumb thing to do...I know, now. Off to bed now, my only relief, besides driving. Thank you all again for your time. TJ
TJ (TJI PSI@aol.com)
Huntsville, AL USA - Monday, February 15, 1999 at 22:08:10 (EST)Praise the Lord, there are others! I have searched for almost a year now. My Family doctor, two ENTs, a nerologist, an MRI of my head.........well you know. My story starts differently. I got off of a go-cart with my son and when we arrived back at the motel we were vacationing at I picked up the five year old son who had fallen asleep and the ground felt like it was moving under me. Driving is my only relief also.... It has only stopped once since then for two days at the tail end of an antibiotic taken last summer for a sinus infection. It came back as quick as it went. I have not had a opportuity to read much in your forum, but I will....thank you for any information that might help. I cried when I found you,
TJ (TJI PSI@aol.com)
Huntsville , AL USA - Monday, February 15, 1999 at 19:36:12 (EST)I have been rocking and swaying since I took a 14 day river cruise over 6 months ago. 6 of those days were spent in port. I've had all the tests and all were negative. None of the medications have helped my swaying. I did have a cold/sinus condition during the cruise. I first felt it on land during a sightseeing visit to a museum, and I felt like to walls were going to close in on me. Never was claustrophobic before. Now, shopping in malls and markets makes the rocking and swaying worse. The only time I feel better is when I'm in a car, either driving or a passenger. The therapist I spoke to said walking should me me feel better but it doesn't. I try to walk for exercise, but at a snail's pace now. My HMO turned me down for P.T. Has it helped anyone? I'm doing some vestibular exercises at home, but they don't seem to make a difference. I've read that some people have tried ginger and ginkgo. How much, and has it really helped control the motion? I have it constantly. Can't even read. Typing at the computer will last about as long as 5 minutes and when I get up I'll feel much worse, even nauseous. Haven't been able to work since this all started. I'm bored and disgusted. I'm older than the people in Dr. Hain's survey. I'm very interested in what has helped other people. Thank you, Evan, for all of your efforts. I can be reached by email at
jossco@msn.com
Marilyn Josselyn (jossco@msn.com)
Blue Bell, PA USA - Tuesday, February 09, 1999 at 17:42:05 (EST)Hello to everyone that is also suffering from these darn dizziness problems as I am. Over 3 months ago I went to Europe-boarded the plane feeling fine-2 days later the rocking and swaying sensations started accompanied by "brain fog" and a very spaced out feeling. I was determined not to let anything ruin my first trip to Europe...in retrospect I think that the tremendous amount of walking we did in that very cold,crisp air and the fact that I had family around really distracted me from feeling the symptoms as much as I do now.
I have had 2 other episodes of dizziness in relation to travel on either a ship or airplane. One year ago I traveled from Northern California to Southern California...about a one hour flight...and I experienced this rocking for 2 days. The other incident was 3 years ago, I went on a short ocean cruise from Vancouver,B.C. to San Francisco.-about 4 days on the ship and I went through over 2 months of rocking and rolling except that time it was also with nausea. So this time when it happened again and has been hanging on for over 3 months, I finally went to an ENT specialist who found nothing wrong with the vestibular system after testing my hearing and balance. He recommended an MRI be done. I am self-employed and don't carry medical insurance and also don't have the funds to afford this very expensive test. I looked into getting insurance but they won't cover with a preexisting condition. I then turned to doing my own research on the internet and thank goodness I found Evan Torrie and this support group. From what I've been reading I fit right in with all the symptoms of MDD.
The rocking or swaying started because of a trip I took on a plane or boat, it is constant;never goes away...doesn't matter what position I'm in and it is alleviated while I am riding in a car.
It is a HUGE relief to know that their are others out there with the same problems and that I don't have a brain tumor or I'm losing my mind because I also am having problems concentrating and feel very "spacey" most of the time. I have also had a sinus cold for the last week so that seems to make all the symptoms worse.Also feeling depressed about this MDD as I've read so many comments that some of you have had it for YEARS!!!! I just wish the ROCKING AND ROLLING would go away for all of us. Please feel free to e-mail me.
Patty (cowpatti1@aol.com)
Stanton, CA USA - Monday, February 08, 1999 at 21:54:25 (EST)Hi all, my friend found this site for me about three months ago and has been printing it out so I can read all your comments. It really helps to know I am not crazy (as I was initially told my several different doctors). Unfortunatley for me this venue is hard to use since the computer is one of the things that really sets me off. From reading others comments, I don't see that this bothers too many other people, but it increases the rocking for me within five minutes of loging on. I've had MDD for over four years now, the first episode was really bad and started after I returned from a trip in the Bahamas. The only thing that helped me then was finally seeing an occupational therapist and doing the vestibular rehabilitation exercises. Although they didn't eliminate the motion sick feeling I usually have, they have given me incredible balance and I am able to walk and not look like a drunken sailor. That episode lasted about 8 months before I was able to function normally again. I was doing o.k. for two and half years with only occasional mild symptoms until about five months ago. The computer has always bothered me since the first initial bout so at work I avoided using it as much as possible which was pretty easy since I'm in sales and had a secretary who did alot for me. In August, I was behind in my account notes and sat down all day at the computer to catch up. I didn't feel good, but just wanted to power through it. When I finally stood up at the end of the day, I fell right down on my first step. It has been really bad ever since then. Has anyone else gotten symptoms just from using a computer???? Also, I have friend with epilepsy and its really wierd that everything that will set off a seizure in her also sets off my rocking feeling, i.e. ceiling fans, floresent lights, going in stores with lots of isles, etc... has anyone else experienced this? I am only 31 years old and this thing has really put a damper on my life/career. There are some positive aspects though, at least I do get to stop and smell the flowers. I have gone to numerous doctors and was finally diagnosed last October. I've been on all the drugs you have all mentioned and so far the only thing that has helped has been the vestibular rehabilitation (which really does make you sicker while you are doing it, but being able to balance now is a blessing) and seeing an acupuncturist. My acupuncturist has me taking herbs such as ginger and ginko and both those seem to be helping. Also, controlling stress through breathing exercises and mediation has helped. Although I want to share more, the swells are getting larger by the minute and I better get back on the dock before I fall off the boat. Good luck all and please e-mail me with any insights.
Nancy Mulligan (nancymulligan@hotmail.com)
San Diego, CA USA - Friday, February 05, 1999 at 01:35:03 (EST)Hi , I'm new to this web but aparently have had mdd at varying degrees for 5 years. I always had it for a while after plane rides and boat rides but it usually went away after some time and wasnt terribly disturbing . also after thebirthof my daughter in 93. i had it but when all my tests came out normal i hardly ever thought about it cause it was low level. well either stress or something brought it out full force after i weaned off paxil in oct and for 14 weeks its worse than i ever felt and i had to stop work( hairdresser) and sometimes i feel like the floor dropped for a split second. and in bed at night ill rock which im used to but then sometimes i feel lik i come to the end of a cliff andthen pulled back . has any one had this feeling. i keep wondering well what happens when my brain is so tired and i do fall offthe cliff will i feel like im free floating forever.(crazy ) but thats how this has made me feel . 14 weeks and every dr saying all tests normal. than finally one in nashville got it in 2 sec. MDD. IM trying vestibular therapy which makes me feel worse but they say to expect that. vertigo heel from the heel corp. its homeopathic it can take up to 10 days to help. and no side effects. Does anyone doo a treadmill or stair ecliptical trainer. one person on this web said not to do any treadmill and now i wonder if i am hindering myself(i do a manual one) my dr dosent seem to think there bad for this but she said her dr did a study . so has any one had a problem . or better yet whats the best way for us mdd ers to get cardio workouts. without hurting ourselves. Please write me back easpecially with successes , i feel sort of trapped and want to be me again but dont want to do anyting that will get me worse. help and e mail me Rowzanne@aol.com
Rosanne jensen (Rowzanne@aoll.com)
knoxville , tn USA - Wednesday, February 03, 1999 at 19:43:16 (EST)I have experienced "vertigo" for many years, but only several times a year. This month I have had two severe attacks. I called the clinic as I didn't think I could handle it at all this time. Meclizine did not touch it, and as I spoke to my internist, he said it wouldn't. He diagnosed my symptons as benign positional vertigo and prescribed lorazepam to get help with the dizziness and to help me sleep through the night. He told me he has had success with a technique and told me to call his nurse in the morning to set up a time to go in to the clinic. The Dr. said calcium crystals form in the inner ear and when they lodge in a certain area they set off the severe vertigo. This procedure dislodges the crystals and deposits them in a different area that doesn't affect the equilibrium. My husband took me in and the Dr. did a procedure where he had me sit on the examining table, he held onto my head and pulled me backwards very quickly while turning my head sharply to one side. He held my head in this position until the spinning stopped. When he determined which side was mainly affected, he repeated this procedure 3 times, and held my head was around. I then sat in the office for a few minutes just to kind of "level off" and was so much better I couldn't believe it!! The Dr. gave me the diagram for this procedure so if it happens again, my husband could do this for me at home. I am keeping my fingers crossed that this has taken care of the problem. It is the first time I have had any relief.
Shelby
USA - Friday, January 29, 1999 at 11:04:22 (EST)I would like to thank everyone who wrote me from my first posting of a few days ago. I am forever grateful for all of your comments. I have started taking ginger just a few days ago and am planning on trying some of the medicines and remedies that have been suggested. I will keep everyone posted on what has worked and what has not. My heart goes out to all of you-just keep hanging in there and hoping.
Linda
Linda McKenna (LndMcKenna@aol.com)
Stony Brook, NY USA - Thursday, January 28, 1999 at 22:42:31 (EST)I have been diagnosed with this syndrome after returning from Vegas 8 weeks ago via airplane. I had this happen 2 years ago after a flight from Florida but it only lasted 2 weeks. I have a constant unsteadiness or drunken feeling. I have tried all the motion drugs and now I am taking 1 milligram of Ativan a day and it helps a little. Has anyone tried the scopalomine patch in combination with Ativan? I tried the patch alone and it didn't work. Also this candling process sounds like something to try. Has anyone had success with it?Please e-mail with any help. Thanks
Lynn (Follfam@aol.com)
Green Bay, Wi USA - Tuesday, January 26, 1999 at 13:16:11 (EST)First, I would like to thank Evan for providing this website for us. I am an new contributor to this support group,but unfortunately a long time sufferer-9 years. I'll briefly detail my history.
1. I developed Epstein Barr virus (Chronic Fatigue Syndrome) in 1988.
2. I had a relapse of the virus in 1990, but this time I also experienced a fullness sensation in my ears. I took a flight from Madrid to N.Y.C with this fullness sensation in my ears. I developed the rocking sensation a few days to one week after the flight.
3. I have the sensation 24 hours a day, continuous, and in all positions.
4. I was finally diagnosed by Dr.D.Zee at Johns Hopkins. I participated in physical therapy at Hopkins,but it didn't help. I have tried Prozac, Valium, Antivert, and Hismanal. None helped though I might give the Valium another shot. I have tried Xanax and that does seem at times to slow down the sensation.
5. My sister developed the same sensation of rocking two years ago. She had been having trouble with her ears for a few years-ear infections and swollen glands. Two years ago, she flew while having an ear infection and developed the sensation right after the flight. She does get some relief in that the sensation "goes away" when she lays down, but continues the minute she sits up.
I would love the hear more about the various remedies people have tried. Did the ginger work? How about the ginkgo and has anyone also tried candling the ear? Has anyone contacted NASA? Do you think it's a problem of air pressure and the eustacian tubes for some? Has anyone tried the chamber that divers use when they get the bends? Please email me
at LndMcKenna@aol.com
Linda McKenna (LndMcKenna@aol.com)
Stony Brook, NY USA - Saturday, January 23, 1999 at 14:41:20 (EST)This is my 4th bout with MDD. The first three lasted 6 weeks and were less severe. This one is into the 17th month. The first occurred after a plane flight and 10 days of sailing. The rest occurred after plane flight.The last flight I took was the shortest. (45 minutes)Each time the symptoms began three days after flight.I have been told repeatedly to remain active. Part of my regimen was to walk on a treadmill and while very difficult..I was unaware until I was told by the last doctor I saw that treadmills can make it worse. Are you aware of any other activities that can make the symptoms worse? Have any of you flown again while having symptoms? What were your results and of course...do you have any recommendations for alleviating symptoms? (diet..activity etc) Also....do you find your symptoms wax and wain or slowly dissipate?
Rachel (hatswolf)
Philadelphia, PA USA - Saturday, January 09, 1999 at 19:13:04 (EST)Hi everyone, I havn't written here in a while so I thought I would drop a comment. I have heard from several of you and love to talk to all of you. If you ever feel the need please write to me any time. I am still suffering from this nasty stuff and don't seem to be improving. I am so greatful that Evan started this forum I don't think that I can ever thank him enough. It has been said that misery loves company, not exactly but it is nice to know that you are not suffering alone. Keep up the faith it is possible to learn to live with this. Surfs Up! Nancy
Nancy Tapee (NTapee@aol.com)
Santa Barbara, Ca USA - Saturday, January 09, 1999 at 02:12:25 (EST)Just a brief note to say that the gingko seems to be working for me! A few days after I upped the dosage (see last comment of mine) I felt almost normal. It could just be the passage of time that brought improvement I guess. But this morning I forgot to take it, and by noon I was rocking again. I took some gingko and about an hour or two later, it went away. If you haven't tried this yet, or only at a low dosage, give it a try! I am noticing increased tinnitus (inner ears turning on or something?), but hopefully that is just temporary. Good luck! Diane Rose
Diane Rose (ahrose@erols.com)
Bethesda, Md USA - Sunday, December 20, 1998 at 16:01:42 (EST) I said I would report back on what I was trying. The vestibular exercises are very disorienting, but I try to tell myself they are making my vestibular system stronger. I just have to give them more time. The work I've been doing on my neck has made it feel much better, and at times I think I'm recovering. But then I hit a day like today when the rocking started as soon as I got out of bed. I did some more research on gingko a few days ago and found that my dosage of 40 mg a day was too low to expect results. What studies have been done (on a variety of ailments, though not MDD specifically) involved dosages of 120 to 240 mg. a day. So I just upped my dosage. Since it is supposed to take weeks or even a couple of months to work, I am not discouraged yet. From the reading I've done, it seems a healthy thing to take regardless. One last comment -- I read a doctor's musings about how weak vestibular systems seem paired quite often with panic/anxiety disorders, such as acrophobia, etc. He said the one thing malls, heights, etc. have in common is that they could be overwhelming to someone who compensates for a weak vestibular system with an overreliance on the visual system. Since malls sometimes wierded me out even before the MDD struck (oh, and my doctor now agrees that is what I seem to have) and heights have always given me a rocking sensation, his comments intrigued me. So I'm curious -- any other acrophobes out there? I wish I could take part in the chat tomorrow, but my daughter is in a school concert and duty calls. I hope everyone has a nice holiday, and is able to get their shopping done without the malls driving them nuts. This year I'm relying heavily on catalogs!
Diane Rose (ahrose@erols.com)
Bethesda, Md USA - Wednesday, December 16, 1998 at 09:50:52 (EST)Someone please talk to me! These symptoms are scaring me and driving me
nuts. First of all when you all say "rocking" do you mean a rocking
sensation in your head where you feel like you are moving but you aren't
really? Do you have extreme fatigue? Does your body feel heavy at times,
especially your head? On top of the constant rocking do you have sudden
sensations of dizziness or off balance feeling in your head? Do elevators
bother you? Do you sometimes feel somewhat ok and get worse as the day
wears on? Do you ever feel so bad you are convinced that you have a brain
tumor no matter what the MRI said. Has anyone ever gotten worse after
having a baby? Has anyone had this for longer than five years? Has anyone
got this without ever being on a boat or plane? Do dark rooms make the
rocking worse? Does anyone have visual disturbances? Please help if you
can I need answers to all of these questions. thank you.
sherrie (jslither@fgi.net)
springfield, il USA - Thursday, December 10, 1998 at 20:11:10 (EST)This is my 5th or 6th time of rocking & dizziness. As always, it's post airplane flight. It never bothers me until a day or two after I've been home- and usually one or two flights aren't enough. I'm not too put out about it- I know that it will fade slowly over the next 8 weeks and that ignoring it and staying active is the best thing I can do. (Although I will try the ginger....)
Lisa Wahl (cforat@aol.com)
Berkeley, CA USA - Wednesday, December 09, 1998 at 00:22:43 (EST) There are several things that I forgot to say in my comments of yesterday. And, before I get to those, is there anyway to keep our separate paragraphs separate? I had my long comment very carefully spaced out, but when I added it here, it came out as one big, hard-to-read paragraph. This time I will try to use the space bar rather than the enter key to get to a new paragraph. Please bear with me if it comes out even stranger this time. 1. I mentioned ginger and ginseng before. I forgot to mention that they both (as I recall) are anticoagulants. So if you have heart or bleeding problems, or are getting surgery or dental work, you should let your medical professionals know you are taking them. In fact, you should let them know what you are taking in any event. I also recall from some herb site that gingko can take about 8 weeks to have any effect (this is any effect -- the site wasn't geared to MDD). I don't think there are long term concerns with taking ginkgo. Many people take it just to keep their mind working optimally. I don't know that there is any support that it helps people without a problem think better. Perhaps it can help all you who feel a little fuzzy from the MDD, even if it doesn't stop the rocking. 2. I've seen a couple references to tai-chi as being helpful. Do any of you have experience with this? Would yoga work as well? Both utilize deliberate movement, holding positions and challenging balance. I ask because I have a number of yoga tapes and enjoy it, and the one time I tried a little tai-chi I didn't enjoy it. If it has to be tai-chi though, I will do it. 3. What happens when you go on a boat again? My husband asked if this would get the vestibular system back to where it was performing properly, kind of like rebooting the computer when it freezes up. Has anyone been brave enough to go on a boat, and if so, what happenned? 4. My husband told me that he recalls that some astronauts have experienced the same feelings upon return, and they are cured by going on a centrifuge. Not really practical for us I admit, but what about rides in amusement parks or fairs that make you feel g-forces? Has anyone tried this? Would it make you feel better, or far worse? I look forward to your feedback.
Diane Rose (ahrose@erols.com)
Bethesda, Md USA - Saturday, December 05, 1998 at 07:32:21 (EST)hi, boy am i glad to find you people! for several years i had sudden bouts
of dizziness(like a sudden off balance feeling in my head)then after the
birth of my son 8 months ago it got even worse(maybe the stress) I almost
always feel like i'm rocking, but i have never been on a cruise. long car
trips seem to set me off or even elevators. i usually feel better in the
morning but as the day wears on it gets worse. i am slso very tired and
when i am tired the dizziness is worse. sometimes stores bother me and
sometimes they don't. i seem to be ok while driving but the minute i get
out of the car and try to sit still somewhere the feeling returns. please
can anyone relate?
sherrie (jslither@fgi.net)
springfield, il USA - Friday, December 04, 1998 at 15:58:58 (EST)hi, boy am i glad to find you people! for several years i had sudden bouts
of dizziness(like a sudden off balance feeling in my head)then after the
birth of my son 8 months ago it got even worse(maybe the stress) I almost
always feel like i'm rocking, but i have never been on a cruise. long car
trips seem to set me off or even elevators. i usually feel better in the
morning but as the day wears on it gets worse. i am slso very tired and
when i am tired the dizziness is worse. sometimes stores bother me and
sometimes they don't. i seem to be ok while driving but the minute i get
out of the car and try to sit still somewhere the feeling returns. please
can anyone relate?
sherrie (jslither@fgi.net)
springfield, il USA - Friday, December 04, 1998 at 15:58:11 (EST) Boy, I was a little unsteady there and abruptly terminated my previous comment. (If you have this thing, you might as well make use of it as an excuse!) I'll try again:
1. How many of you are prone to neck problems? I had a regularly scheduled chiropractor's appointment yesterday and he seemed very familiar with this complaint. He said he has had patients before that feel better after a few neck adjustments. I know my neck was pretty stiff before I went on the cruise, and continues to be. Could this somehow cause or contribute to MDD? Has anyone else had several neck adjustments, and how did this affect their symptoms?
2. I saw a group of balance exercises at http://www.aos-jax.com/bal_exer.htm. They look interesting since they include a lot of eye and head movements. I've done them a couple times so far. Has anyone else tried them?
3. Speaking of exercises, my chiropractor gave me one that he originally heard from his parents, who got it from a doctor. My chiropractor says it seems to work for at least some people. You sit on the edge of the bed, and then let yourself fall backward. Before you land, you turn your head to one side. You then repeat, turning your head the other way. You then repeat once more on each side. This is something I'm supposed to do everyday until he sees me next week. I don't know if this will have any effect, but it sure is fun. It is a chance to work out your frustrations with all this (as in --"You've been a very bad vestibular system, and now you've forced me to punish you.")
4. The last comment before mine mentioned ginger. Has anyone else tried it? I've taken it a couple times so far; my ears feel different (sort of tingling rather than the dead feeling before) but there is no impact on the rocking I feel. Could this be because I am still taking the meclizine? The doctor only gave me a prescription for a few days and I thought I should take them all to give myself the right to go back and tell him it doesn't work. In all the descriptions I've found, it says ginger helps with motion sickness, but it doesn't explain if the effect is on the stomach and/or the vestibular system. If the latter, it could work for MDD as well. I've also read about ginkgo on herb information sites as a treatment for, inter alia, dizziness, vertigo and tinnitus, since it enhances blood circulation. I just bought some and then came back, signed on, and saw the Loyola University site that says there is some research evidence that it "enhances recovery of the central vestibular system, without too much in the way of side effects." I have not seen any mention of gingko in this forum. Has anyone tried it, either successfully or unsuccessfully? I'll try to report back with my experience. Of course, without a study, no one can prove that an intervention works, but do we expect any studies soon on a fairly uncommon, non-life-threatening disorder affecting primarily women in their 40's?
I've also decided to try high-quality chocolate and see if this helps. Hey, if chocolate has a demonstrated effect on the brain (and it does, I just don't remember what -- seritonin production or something; the effect I recall is greater in women), and stuff like valium is prescribed for MDD, why not? As I said before, the least this thing should be good for is good excuses. I think I will be too dizzy tonight to cook dinner. I hope my attitude hasn't offended anyone who reads this in a despairing mood. I've felt that way too; I'm just in a gallows humor sort of mood right now. I can still hope that I will be one of the lucky ones who get better. Even so, I guess if you have to have a chronic disorder, it is best to have one doesn't involve pain, seizures, loss of motor control, incontinence, vomiting, etc.,etc., but rather makes you feel you are on a cruise, permanently.
Diane Rose (ahrose@erols.com)
Bethesda, Md USA - Friday, December 04, 1998 at 13:13:37 (EST) Hi -- I guess I'm the new kid on the dock. I just got off the physical ship five days ago. Since I've found this site you can guess the rest. I have felt like this before from boat rides, but it always passed after a good night's sleep. I would appreciate any advice any of you have about how I should proceed. Is there any point in going back to my doctor, telling him that the meclizine didn't work (naturally), going to specialists, having a bunch of tests, etc., just to be told I have what I think I have and that there is no cure? I may get better, or I may not. The next month is enough of a hassle in the best circumstances! I've already read through everyone's case studies, all the forum comments, and all the pertinent Web sites I could find.
My questions and comments are:
Diane Rose (ahrose@erols.com)
Bethesda, Md USA - Friday, December 04, 1998 at 12:21:00 (EST)It may be that this MDD episode had just reached its natural termination, BUT my MD had suggested I try GINGER [the spice] for my relatively mild [but as you all know-maddening] case. Bought capsules at the local health food store and started w/1 Sun. night and Mon. a.m.--and for the 1st time in 9 1/2 weeks, had no rocking until late afternoon. Promptly took another capsule when I got home, and within less than an hour--the rocking disappeared again! Anybody else try this?
kim gerhardt (gerhardtkm@juno.com)
tacoma, wa USA - Tuesday, November 10, 1998 at 09:56:17 (EST)I'm wondering if there is anyone who has tried any alternative therapies for the depression that seems to go with MDD, such as St.John's Wart or other things.If anyone has any feedback, I'd appreciate it. Susan
Susan Garry-Lorica (sglorica@yahoo.com)
pacific grove, CA USA - Wednesday, October 21, 1998 at 14:44:26 (EDT)1. Evan, thank you, thank you, thank you. You get my personal 'Ghandi' award.
2. Tahnks to everyone who posted case histories or added comments--info re: possible medications, life style give me hope and finding that others have immune system crashes with MDD, identical symptoms [intially caused by travel but not all subsequent attacks.
kim in tacoma (gerhardtkm@juno.com)
tacoma, wa USA - Wednesday, October 21, 1998 at 00:29:01 (EDT)Thank you, thank you thank you. I am so happy I found this site. I have just hadthe Internet put on and it is a blessing for me to see other people have the same aweful problem, but my heart goes out to all of you.
I had vertigo five years ago, then was OK for a couple of years. Then got depression. Two yearsago I had positional vertigo which was aweful. I also have bad tinnitus. After a rollacoaster ride of doctors, specialists, phychiatrists and alternative health practitioners, most who never heardof this condition, I was diagnosed with MDD. The only drug that helped was Sandomigran, an anti-migraine drug which caused too many side effects! Anti-depressants didn't really help, valium only sometimes.
However, I would like to share some hope. Although it has not gone, my ability to cope has increased dramatically (and will even further after reading others' accounts). I have learnt to live with it, in a way. YOGA has helped enormously, not taken it away, but I believe this is an imbalance of the whole system. REALLY. Yoga postures stretch and get flow back into the body and energy flowing through the system. Sometimes I force myself to go to a class, but honestly, I am one of those stubborn people who tries everything. If I get the rest of my body well, it may eventually resolve! I smoke - everytime I give up I get much worse, so smoking helps me somehow. (Not that I recommend taking it upl!) I spent two weeks in hospital last year with doctors and psychiatrists suspiciously telling me I was chronically depressed and my symptoms would disappear when the depression lifted. Meanwhile my brother-in-law died and my father passed away a year ago. My marriage suffered but thankfully has made it through. My husband looked almost surprised to see others suffer from this. If only I could find someone in Australia!
All the things I read - the rocking sensation, shaking , floating, eye disturbances (does anyone get a 'halo' effect and repeated images?). I had all the tests, doctors even promised me it would disappear! Acupuncture, chiropractic (my bad neck is now completely better thanks to yoga - it really helped more than any practitioner!), osteopath and a strange variety of quirky methods, can all be summed up as a waste of time and money. Although I am sure they can help some problems.
One of the hardest things is feeling like I have become a different person altogether, sometimes I don't recognise myself. I feel so sorry for my kids. Ithought it may have been a 'spiritual crisis' and still do in some ways. But alas, I think it is a real physical problem of no known cause. Believe me, I have searched! It is not the food we eat, or the chemicals or anything like that. I have found that as I accept it, I am getting better. As I focus on the good things in my life, past and present, I am getting better. Just watching a bird flying in the sky or having a laugh can help (even if it does make me dizzy). Most of all, living in the moment is the only way. If I feel dizzy, so I do now, but later I may not and sometimes I don't. I have stopped searching for solutions, but rather focussing on what quality of life I do have. Love, peace and so on. There are very dark moments when all I can feel is like I am about to pass out with dizziness, but I just need to get through that moment and then put it behind me. Just to carry on with the rest of my life is what is important. This hasn't come easy. It is hard work! But worth it. Don't let MDD rule your life, go on with what is really important. Remember you area lot more than MDD, whoever you are. Last week I started working again, despite feeling sick. It has also helped. I am back out there and refuse to drown in feeling sorry for myself.
My heart is with all of you. Smile and try a yoga class.
Annette (cohen@orac.net.au)
Canberra, AC Australia - Saturday, October 03, 1998 at 20:08:42 (EDT)I have had a persistant rocking of my body for 5 months now. My husband and I went to Australia (14 hours both ways), had 6 flights while we were there and a 20 hour train ride all in 3 weeks. However, we had several other flights within a 5 week period. I was dizzy when I got back from Australia, but thought it was fatigue. We took another trip to Denver from St. Louis for house hunting as he had received a new job here in the Denver area. Three days after I returned from Denver, I started rocking back and forth. Sometimes it is very gentle and other times I sway way out side to side.
I found this web site right away. I saw my symptoms, but surely did not like the prognosis I saw from people. I went to a critical care place when I first had this. It scared me so bad. Then I went to the Chiropractor. Then the chiropractor did some acupuncture on me. Then we moved.
Since I have been to Denver, I have gone to a practitioner trained in Traditional Chinese Medicine. He gives me an acupuncture treatment and Chinese herbs. He has given me advice on altitude sickness (deep breathing, etc.) My treatments seem to help, but I still get dizzy and rock. I wish I could get better. I was one that had a lot of stress in my life... lost my job, new marriage, 2 deaths in the family, adjustments to married life with a new man, a move to a new city, lots of travel that I never did before.
Please write if you want. Thanks for this website.
Margaret Nissen
Margaret Nissen (margaretnissen@hotmail.com)
Arvada, CO USA - Friday, September 18, 1998 at 19:34:12 (EDT)Just checking to see whether things are still working
Evan Torrie (torrie@etete.com)
Stanford, CA USA - Tuesday, September 15, 1998 at 21:46:23 (EDT)I just discovered this site and am very excited about it! The first time I experienced MDD
was right after a 3-hour site-seeing cruise back in November of 1996. The waters were very rough,
so I just figured that the sensation would go away within a couple of hours. When my surroundings appeared to
move, I went to my family practitioner(HMO),and she prescribed antivert. When I didn't want to take it because
it made me sleepy and it didn't seem to help, she said that there was nothing that I could do anyway, because
it would have to go away on its own. She also told me that I should probably not go on any boats. This bout lasted
for a total of 3 weeks.
Well, I stayed away from boats, however, I got it again when I was on a wave runner in March of 1997. This time it
lasted 4 weeks. Therefore, I added wave runners to my list of things that I could no longer participate in. However, just
last month, I had to add another. This time a jaccuzi! I still have it, however, it's a little different than the other
two times. This time, I am rocking, whereas the other two times, my surroundings were moving.
After reading everyone's comments, I'm sure that MDD is what I suffer from. I especially knew when I read Ingrid's comments about
feeling like she's "bobbing around on ocean" and feeling as though "someone gives her a shove now and then." I laughed when I read
that because I can totally relate. I also get the feeling as if someone has pushed the floor up beneath me. I guess my body thinks
there's a huge wave under me.
Well, this is the longest period I've ever had this. By the way, many of you wrote that your doctor says that it's depression or stress.
I know that this is totally untrue(at least for me), as I am always happy and was never stressed when I experienced MDD. Well, gotta go - the computer is
making me rock! You are all in my thoughts. Hang in there!
Samantha
USA - Sunday, August 30, 1998 at 21:40:13 (EDT)Hi!
During my Christmas break of 1997, I took my first Carribbean cruise for
seven days. I believe I had my first attack while snorkeling in St.
Martens because I could not tell the difference between the sky and the
water. My Although I am am excellent swimmer, my husband had to rescue me
from the sea. Upon my return to Chicago, I felt fine. About twelve hours
later, I woke up in the middle of the night and swore that I was
experiencing an earthquake in my house. I could not stand on my feet and
the floor was rolling under my feet. I am a teacher in a middle school, and
prefer not be miss my job, so I decided to go to work anyhow. My
co-workers thought I was drunk because I was hitting both sides of the wall
at school. Fortunately, my school nurse picked up on my symptoms quickly
and tried to get an appointmet with an ENT as soon as possible. Since I
had never seen one before, no one would see me for weeks. After three days
of vomiting, nausea, tinnitus,pressure on the frontal part of my head, and
total loss of equilibrium, I desperately drove myself to ER. I have had a
CT, MRI, CBC, seen the audiologist, and on numerous occasions seen an Ent
specialist who diagnosed me with Meniere's disease. I have taken antivert,
Meclizine, diazaphem, and tried the transderm patches. I had to explain to
my sixth graders that I was not an alcoholic and in fact, did not drink.
They were very sympathetic and understanding during this school year.
Unfortunately, some of my co-workers at other schools rumored that I had
begun to hit the bottle! I always gave the appearance that I had drank 8
-12 drinks of liquor! After three months of suffering with the above
symtoms without any relief, my husband made an appointment and drove me to
Mayo Clinic in Minnesota during my Easter vacation. The doctors and
therapist at Mayo were very efficient and understanding. They said I
didn't have Meniere's disease, but I was suffering with "persistent
disembarkment syndrome;" this means that my body did not acclimate itself
back to land after being on the sea. After spending a fews days at Mayo,
the therapist had to teach me how to walk again and gave me some upper
torso exercises to do. They said my symptoms should disappear by May.
Since I do not like taking medication, I only take diazaphem if I am having
an attack and must leave the house. Usually, I must lie down immediately.
Unfortunately, it is nearly August now, althought I do not experience all
these symptoms daily, I still have attacks about every 5 -6 days which
include pressure on the front of my head, tinnitus, loss of my equilibrium,
and difficulty to concentrate. I have been told that I will have to let
"nature" heal me because this syndrome is rare. It has been very
embarrassing and difficult to deal with since I used to attend step
aerobics classes and run on the track regularly. It has been comforting to
read about other sufferers like me. I hope everyone else is seeing some
improvement with their condition. Please write to me, and let's support
each other.
olimsu@Netnitco.net
Cheryl (olimsu@Netnitco.net)
Gary, IN USA - Wednesday, August 05, 1998 at 18:44:23 (EDT)Hello all, at this point I don't know whether I have MDD or not, but a I do have a lot of the symptoms. I have been suffering from chornic vertigo since I was 4 years old. As I have gotten older my illness had become much more severe. I get severe attacks of dizziness for months at a time. As of yet there is no diagnosis for my conditiion. Any type of sudden movement brings on an attack. Especially long trips in a car or plane. My doctor's have no idea what I could be suffering from. I have had MRI's, EKG,ENG CTscans, hearing test and all of them come back negative. I have been on every batch of medication for motion sickness my whole life and nothing helps. I am 27 now and have been suffering from this strange illness for 23 years. My doctors have told me there is nothing they can do for me and that I should see a pshychiatrist for depression. My spells are extremely severe and I am desperate for any help or suggestions anyone can offer. I am constanstly searching for new doctors or clinics that can help me. So far I have fallen on deaf ears. My doctors seem not to care that this life long problem is very serious. I can't work or leave my house any more. Need less to say I am depressed. If any one has any information that can help me please write.
Thank you and god bless
Aliza Grant (Jedi7@prodigy.net)
San Francisco, CA USA - Tuesday, August 04, 1998 at 15:22:59 (EDT)I've written about my MDD before, so I won't repeat my history. I need to
correspond with anyone who's had surgery while having MDD. I'm having both
knees replaced in September. This will put me on crutches for a month or
so. I have no idea how I'll navigate with the crutches while the world
goes up and down!!! Has anyone had any effects from anethesia or other
drugs? When I explained my condition to the surgeon, he just laughed and
said the surgery might cure it!!! Please reply to my e-mail address if you
can help me.
Judy Sayrs (jsayrs@ctc.aosmith.com)
Milwaukee, WI USA - Tuesday, July 28, 1998 at 14:17:31 (EDT)Have any of you gone to see an OTONEUROLGIST??
Boston, Mass. General Hospital..Dr. Parker
2 visit's and her dizzyness is gone......
Rita (yaya7@aol.com)
Ma USA - Saturday, July 18, 1998 at 13:05:49 (EDT)I, too, have all the symptoms of MDD, but have not been "officially diagnosed". I DID NOT take a cruise or fly. My symptoms were brought on by either (1) violent shampooing at a favorite hairdressers/ or (2) Use of the new Sonicare electric toothbrush.// January 11, 1998, I woke to spinning --- I was terrified. Saw my primary physician, had an MRI, saw 2 ENTs, had the HallPike maneuver to treat benigh positional vertigo ---- and the rocking began. I still feel like I'm "bobbing around" on the ocean, or like someone gives me a shove now and then --- I sometimes feel like my head is being forced forward or backward or sideways. Water is my worst enemy ---- I can't take a shower without hanging on to the towel bar ---- I can't wash dishes or brush my teeth without hanging on to something. I can't drive anymore --- flourescent lights make me crazy! Watching fast movement on television makes me dizzy ----- when I sit still, objects still move --- like the walls are "breathing". Neurologists have said I'm depressed ---- OF COURSE I AM!! They've also said "give it time --- it'll go away". I can't bend down or look up or look down without getting dizzy. I can't work anymore. I'm on medication -- Neurontin -- for the dizziness, but I don't think it does a thing. I'm also on Ativan and Elavil. Sometimes, when I wake up, I have vertical double vision, and my vision has gotten progressively worse in a three month period. I still sleep in a recliner ----- the thought of ever laying down again terrifies me. I see a counselor ---- that helps some. Computers make me dizzy --- and this is very difficult ---- because I want to do research on MDD and talk to others for support. I just pray for a miracle for ALL OF US. Please feel free to contact me. I will respond --- perhaps not immediately --- but as soon as I can. Thanks for listening. Ingrid
Ingrid (legend@midusa.net)
Great Bend, Ks USA - Friday, July 03, 1998 at 19:57:54 (EDT)I just read the comment about this crazy syndrome getting worse when it rains. I find that when ever a low pressure front is near it begins to get worse. Since my episodes have been triggered by airplane flights I have often wondered if this is related to the pressure in the air. It would be interesting to corolate the information and see if there were low or high pressure fronts in the area when each of us contacted MDD.
I have as yet not gotten better and I am starting my third year of this. In fact this is somewhat worse lately. Does anyone else experience ups and downs that last long periods of time, not just short daily changes?
Write me if you want I always like to hear from others. Surfs up!! Nancy
Nancy Tapee (NTapee)
Oxnard, Ca USA - Thursday, June 25, 1998 at 13:50:16 (EDT)My mom has just been diagnosed with MDD thanks to your web site!!!!
Her ENT was given information by her therapist who researched your site.
Prior to this, the ENT had done nothing more than the try this medicine and
wait and see, come back to see me in three months. My mom has been feeling like
like she is going crazy ever since she got home from her first cruise.
I was so excited for her to go on the cruise back in November of 1997, but
she has been so miserable ever since. To tell the truth, this site has
validated her symptoms to me as well. It is not as if I questioned them, but
it is SO great to read what others have experienced and see a little of what
she has been going through. My question is whether it is familial. I would
very much like to avoid this dibilating problem if at all possible. Thank
you again for all of the support you have given both of us. Oh yeah! She
kind of laughed when we filled out the survey together and said 'Don't put
there that the symptoms are worse when it rains!" But I see that she is not
the only one that that happpens to as well!.
Paige Kramer (krame27@ibm.net)
Winston-Salem, NC USA - Wednesday, June 24, 1998 at 14:44:52 (EDT)I have been "better" for months now, but still feel it would be useful to share my story. On January 14, 1998 I took a three-hour flight from Cabo San Lucas (Mexico), to San Francisco. Earlier in the vacation, I took a very rough whale-watching trip as well. The night before my flight to SFO, I didn't sleep much, mostly because I just didn't want the vacation to end. I am afraid to fly, and I have never gotten any anti-anxiety drugs or motion-sickness drugs, so basically, I self-medicated with alcohol.
The flight was bumpy, and we spent about an hour in the fog before we were allowed to land. I felt strange the next day, but chalked it up to alcohol and fatigue. By strange, I mean that I felt like I might walk across the road right in front of a car, or turn into traffic the wrong way. Disoriented. I was a little dizzy too, but nothing fatigue wouldn't account for.
I felt that way for a few days before I started noticing that it was strange to feel weird for so long. I started noticing a pattern of being "fine" in the morning, and then a couple of hours into the day, I would start to notice the mild dizziness again. By the end of the day it was definitely worse.
Activities where I noticed it very strongly were while I was using the computer (I'm a programmer, so this was a bad sign), and while I was eating, because I would look down at my plate and the back up again, and this would make me dizzy. I also noticed feeling spacey. It was hard to concentrate and language skills went south a little.
After two weeks I finally made an appointment with an ENT (who I already see for allergies), and I searched for dizziness topics on the web. When I found this site and read about the symptoms and the pattern of onset, I felt both relieved and terrified. I was relieved to find an identifiable name for this thing, and because I figured it probably wasn't a brain tumor or something drastic. And I was terrified because it's clearly this bizarre little disease that no one knows about, hardly any one can identify with, Dr's tend to misdiagnose, and for which there is apparently no solid cure. Neato. Panic? Yes. I was very, very upset.
I was able to see my ENT within another few days, and I shared with him the information I received from this site. He testing my hearing, checked my ears, and did the usual stuff. I checked out mostly normal, but a little off-balance. He gave me what is apparently a standard exercise where you focus on a near object, then focus on a far object. This exercise I did with some regularity, but I have no idea whether it helped or not.
Eventually, I noticed the dizziness waited until later and later in the day to bother me. This was like a mind game. Every day I would wake up and feel fine and hope for a few hours that it was gone for good. Then, I'd lean down to pick up something, or I'd move too quickly, and it was back. It was never debilitating, but it was very distracting and, frankly, a little scary.
Also, I was able to spend some days in a seminar where I never had to focus on my computer. About six weeks after the flight which I believe started it all, the dizziness was almost completely gone. I can say now that it's gone for good, except that sometimes when I get really tired, I wonder if it's back a little. What the heck, though, you always feel a little off when you're tired, so let's just go ahead and say I'm better.
You understand, I was never fully diagnosed with MDD. Symptoms match, onset matches, couldn't find anything else out at first pass. Since the dizziness wasn't that severe, I chose to wait it out a while before I spent more money just to find out for sure. I suspect that there are lots of other "mild" cases that never get reported, because people just don't want to bother, or because the MDD itself goes away before the medical bureacracy has had the time to process you towards an expert.
For those of you who have severe and prolonged dizziness, you have my greatest sympathy. I hope my little story helps someone with a mild case who is feeling hopeless. My advice: It just might be short-lived. Get help if you can. Stay informed. Have hope. Get lots of rest.
Jenifer Lindsay (jlindsay@customprogramming.com)
Mt. Shasta, CA USA - Friday, June 19, 1998 at 03:56:13 (EDT)I think my mom might have MDD she has had all sorts of tests
done and everything is normal...she is very depressed..
she was on meclizine then her doctor swiched her to ativan
which helps sometime,Now he wants her to go for therepy.
Has anyone found therepy helpful? And i've been reading
some of your post's is Valuim better for this then the
pills she's taking...this is her 3rd.bout with this in 10
months.this has been the longest it's lasted 2 months..
Please help me..E mail me...thanks
Rita (yaya7@aol.com)
Ma USA - Tuesday, June 02, 1998 at 20:40:43 (EDT)I, like many others, was so releived to find a name for my condition. I have
been to two doctors - my family doctor and an ENT. Between the two, I've
had all the standard treatments and tests as others have including
antihistims, antibiotics, patches, decongestants, and valium. I've had the
hearing/ear tests, the hot/cold water, the light bar and other tests. THe
ENT has just written "No further treatment" on my file -- in other words,
live with it. He did not care for the fact that I informed myself on this
condition including all the Internet items. He said there was no such
condition called MDD and perferred to call it CHRONIC MOTION SICKNESS
brought on by inability to adapt to land travel. My question is this:
nin the last two-three weeks, I have had, on 3 or 4 days, no symptoms for
the morning (once almost all day). Then it comes back with avengence.
Does this mean it's stopping? Or should I just wake up one day and have
it gone? Also, the ENT said it was self-limiting and would go away by
itself. Do you agree?
Judy Sayrs (jsayrs@ctc.aosmith.com)
Milwaukee, WI USA - Monday, June 01, 1998 at 14:27:53 (EDT)I have been suffering from dizziness for two years now ;well to tell you the truth i didnt know what happining to me.Isaw many doctors and every one witth different diagnosis .One told me ihave depression , another one gastitis ,and all the time itold that this happen when i went in airplane travel to nj .
but nobody have any idea about MDD .
SO THANK
janet
USA - Sunday, May 24, 1998 at 00:40:59 (EDT)I am a physical therapist who works in neurorehab and does vestibular rehab. I evaluated a patient this week who obviously has MDD although prior to finding this site I wouldn't have known, so thank you! People have mentioned PT as beneficial and I would like some feedback to help my patient, future patients, and to educate other health professionals. I have issued exercises for the few areas of deficits but was wondering if general cardiovascular exercise or specific vestibular exercises have been helpful for anyone. Any feedback would be appreciated. Please contact me at Tricialupi@aol.com
Thank you in advance. Trish
Tricia Lupi, MS,PT (Tricialupi@aol.com)
Winston Salem, NC USA - Thursday, May 21, 1998 at 21:37:17 (EDT)Thank you, everyone, for your comments, info and supportive words. I have just found this site via the VEDA page and am soothed to hear all of your stories. I am in the midst of a five month (so far) sensation of rocking that was NOT brought on by travel but rather (it seems) by a whopper of a virus back in Dec '97. I have had ENG and Posturography and an audiogram, but the ENT says they are all "within normal range." My question -- so why am I rocking????? I have seen a PT who gave me two exercises to try (walking down supermarket/mall aisles because it makes me worse and putting a business card on a very busy background of wrapping paper and focusing my eyes on a word/letter on the card while I turn my head side to side quickly). I am also scheduled for an MRI next week to rule out brain pathology. The ENT/Neurologist I saw today at Johns Hopkins Hospital in Baltimore (Dr. Zee) called it MDD but only one comment on this forum mentions cases of MDD - like symptoms not brought on by travel. Anyone heard of this in their research?
And by the way, thanks SOOOO much for sharing the emotions of frustration, helplessness, depression, etc you have encountered in trying to push for answers -- or even get an MD to take you seriously!!!! My primary care doctor was such a stumbling block (HMO hell) -- was very resistant to even referring me to an ENT. I have left the HMO and am now with a preferred provider network (Blue Cross Blue Shield) which has been much more inclined to HELP ME. Thank you for letting me know I am not alone. THis has been such an emotional strain on me -- I feel debilitated, not inclined to be sociable because it seems like work to act "normal," and general malaise and a sense of a limited future. This really has interfered with my life and if I can get home from a day's work, eat and go to bed, it's an achievement.
Julie Nelson (jnelson@i-way.net)
Baltimore, MD USA - Wednesday, May 06, 1998 at 19:56:35 (EDT)Can anyone tell me how I can get a copy of Dr. Hain's article on drugs for vertigo?
Thank you in advance.
Karen Moreland (Newegglady@aol.com)
USA - Monday, May 04, 1998 at 17:58:23 (EDT)Like a lot of people who have left comments here, I am self-diagnosed, so far. This is my fifth bout of mdd, and so far my HMO has noly been able to tell me that I don't have Meniere's. I've printed out everything on this wonderful site and will go armed with all your information and comments next week.
The most interesting information to me is that some of you have been able to prevent mdd when you've flown or whatever. I know what will bring it on, but until now I had no idea of how to stop it happening. Since my doctor seemed to be clueless, too, I didn't know what to ask for.
Are scopalomine patches available in drug stores? because my HMO gives out Valium in two-pill dosages! The current bout began on the return trip from a funeral in England, so there would have been no time to get a prescription anyway. Having something in the house for emergencies would have been a life-saver.
Thank you Evan, for putting up this site, it is a real relief to know I'm not as crazy as my doctor seems to think I am! 8-).
Anne Kelly (akelly@bpl.org)
Boston, MA USA - Saturday, April 11, 1998 at 14:14:33 (EDT)I just wanted to say that Scopalomine patches are back on the market now. They have helped me a great deal in the past when used in conjunction with valium, it totally prevents the problem. This may work for others.
Sherry (Kohlwin@sprynet.com)
New Orleans,, LA USA - Sunday, April 05, 1998 at 15:39:21 (EDT)I have just found this website. It is so very helpful! Since an Alaskan cruise July, 1997 I have had MDD. Had done several cruises previously with no problems, including a very rough crossing of the Atlantic. It is nice to know I have company out there, altough I don't wish this on anyone. Seems I have tried most of the things I have read about--to no avail. I continue to do everything, but as you all know, it gets really difficult at times. I don't like to be a complainer, but once in awhile the dizziness gets more than I can handle. I'm to the point that I have decided I need to learn to live with it. Sound right?
Nancy Stolz (nancy@stolz.com)
Tacoma, WA USA - Tuesday, March 31, 1998 at 03:29:23 (EST)Cathy, thanks for writing back. I don't know when you might see this message but if you like you can write me directly at my e-mail address. I would like to hear from you and how you are doing. This disease I have discovered can get much worse with stress. I have also found that I am more susceptible to other diseases. At leat I think that this has that effect on me. Write when you can. I understand not being able to get to a computer very often. I really wish you well and hope that you will respond. Surfs up!! nancy
Nancy Tapee (NTapee@aol.com)
Oxnard, Ca USA - Saturday, March 21, 1998 at 03:02:20 (EST)Cathy
Thanks for the support I would like to know at what dosage anyone got some relief from valuim as i am starting to take this but goes seem to effect anything .
Thanks for any answers I might receive.
Betty
Betty Behring (bettyb@enid.com)
enid, ok USA - Saturday, March 14, 1998 at 15:08:28 (EST)DEAR BETTY BEHRING, I TO HAVE HAD LITTLE HELP WITH THERAPY.YOUR MDD IS SO LIKE MINE.ARE YOU A CHRISTIAN WOMEN?I AM.I AM HOPING FOR A FAITH HEALING.IF YOU FIND ANY RELEIF WITH ANYTHING I WOULD LIKE TO KNOW.HANG IN THERE . CATHY
cathy
in USA - Thursday, March 12, 1998 at 14:57:51 (EST)I too believe that I suffer from this malady. I am only 27 and have had
symptoms since I was 24. It all began when I flew in to New York, then
took a two hr train to Long Island, then took a ferry to Fire island. It
was awful. I saw a doc up there - he said vertigo, got some meclazine. I
slept my way through the rest of the trip. It was the first vacation with
my in-laws, and I was totally debilitated. I returned home and saw an ENT
after two weeks - checked out ok, said it would go away. After about a 1.5
month, it finally did, although I still got it when I was fatigued. Since
that trip, I have had it two more times in conjunction with airplane travel.
Each time doc says its vertigo, gives me a shot and meclazine. I never take
the meclazine anymore. Next time she says she'll do neuro tests. Now that I
have found this site though, hopefully I won't need the tests. It is so
awful not to be able to look forward to trips anymore. I love to travel
and this ailment really irks me! I'm hoping that one of you will know of
a DR in the Greenville,SC area that can help me. My husband and I are going
on a backpacking trip to Escalante in Southern Utah. If I have this again
the trip will be ruined. We of course have two flight legs and 13 hrs of
driving over two days to look forward to, and thats just getting there.
I hope one of you can write with an RX for prevention. I would really
appreciate it. All of your stories help, I only hope that we can bring
this to the forefront of medical attention. Thank you.
Krista Wagenbrenner (Wagntrain@aol.com)
Greenville, SC USA - Monday, March 02, 1998 at 20:51:45 (EST)I too believe that I suffer from this malady. I am only 27 and have had
symptoms since I was 24. It all began when I flew in to New York, then
took a two hr train to Long Island, then took a ferry to Fire island. It
was awful. I saw a doc up there - he said vertigo, got some meclazine. I
slept my way through the rest of the trip. It was the first vacation with
my in-laws, and I was totally debilitated. I returned home and saw an ENT
after two weeks - checked out ok, said it would go away. After about a 1.5
month, it finally did, although I still got it when I was fatigued. Since
that trip, I have had it two more times in conjunction with airplane travel.
Each time doc says its vertigo, gives me a shot and meclazine. I never take
the meclazine anymore. Next time she says she'll do neuro tests. Now that I
have found this site though, hopefully I won't need the tests. It is so
awful not to be able to look forward to trips anymore. I love to travel
and this ailment really irks me! I'm hoping that one of you will know of
a DR in the Greenville,SC area that can help me. My husband and I are going
on a backpacking trip to Escalante in Southern Utah. If I have this again
the trip will be ruined. We of course have two flight legs and 13 hrs of
driving over two days to look forward to, and thats just getting there.
I hope one of you can write with an RX for prevention. I would really
appreciate it. All of your stories help, I only hope that we can bring
this to the forefront of medical attention. Thank you.
Krista Wagenbrenner (Wagntrain@aol.com)
Greenville, SC USA - Monday, March 02, 1998 at 20:47:23 (EST)Pleased to report that my latest episode ended after 12 weeks. This was about the fifth time that I've had it, always following multiple plane flights. I'm flying again next month (1 hr flight) but based on past experience I don't think it will kick off another episode. I'm hoping (fingers crossed) that if I stick to non-stop flights I can still fly. After so many episodes, I really believe in ignoring it as much as possible and staying active and busy. I did have to put a brighter night light in the bedroom because of imbalance in the dark.
Lisa Wahl (CforAT@aol.com)
USA - Saturday, February 21, 1998 at 23:59:54 (EST)I too suffer from MDD. I started surfing the net for information that might help diagnois my problem of floating and rocking since the wonderful 7 day cruise I took in December. It's wonderful to have a name to apply to a problem and know I'm not alone. I've taken valium, but it doesn't seem to do a thing except make me sleepy. I'd rather rock than sleep. It is quite annoying and by the end of the day, I ready to get off the ship, but I can function. Riding in a car takes away my symptoms, but after I get out of the car the symptoms are the worst. That's usually when I have more balancing problems. My ENT Specialist told me I had a vestibular problem which should correct itself. He did not recommend any more tests because he felt they would all come back normal, but could not suggest anything else than time to cure me. I still feel there must be something that I can take which will releive these symptoms. This was why I turned to the net for some ideas, and also how I found this site. I'm grateful for this site and will spend more time reading the histories and notes. Any suggestions from anyone would be appreciated.
Janet L. Carter (jancart@bellsouth.net)
Pensacola, Fl USA - Saturday, January 31, 1998 at 23:49:41 (EST)NANCY SORRY I DIDNT WRITE BACK SOONER, I AM USING OUR LIBRARY TO GET ON INTERNET AND CANT COME OFTEN. I AM WORKING WITH A PHYSICAL THERAPIST NOW, DOING BALANCE EXERCISES.MY HUSBAND IS THE BEST!!!!! HE HASNT COMPLAINED ONCE!!! BUT I KNOW MY FAMILY WISHES I WERE ABLE TO DO ALL THE THINGS FOR THEM I USE TO DO. SOMETIMES JUST LOOKING AT ME YOU CANT TELL THERE IS ANYTHING WRONG, SO PEOPLE DONT REMEMBER OR REALISE THERE IS .ANYTHING NEW I CAN TRY!!!!
CATHY
IN USA - Wednesday, January 28, 1998 at 13:58:17 (EST)I don't know what I didn't write down my experience sooner, but better late than never. I was diagnosed with MDD in October/1996 and was cured of it by taking Amitriptyline (Elavil). I first came down with MDD after a boat ride in July/96 and my family dr. referred me to an ENT who lucky for me was aware of MDD. He sent me for the usual tests which were all negative. Based on an article he had read, "Mal de Debarquemen tsyndrome: A forgotten entity?" by Terrence P. Murphy which is an article that outlines 4 case histories of MDD and their treatment and eventual cures which involved the use of Amitriptyline, he explained to me that even though he didn't know what dosage to give me, he wanted to try this drug on me. I was ready to try anything at that point and started at 75 mg a day. After 10 days at that dosage, I still didn't feel any better, so following the doctors instructions, I increased by dosage by 25 mg. a day and I did so every 10 days. I didn't feel any better until I was taking 150 mg. a day. After 4 days at that dosage, all of my symptoms disappeared. I stayed at at that dosage for months until the ENT said it was time to start reducing my dosage. So I went back down the way I went up, each time I reduced by 25 mg.my MDD would come back, so then I would go back up for a week or so and try again. The second time my symptoms did not reappear. I continued reducing in this manner and as of October/1997 I was completely off of Amitriptyline. I have not had a reoccurence of symptoms since.
The only problem with this drug (very inexpensive, non-addictive and safe as assured to me by my family doctor and at least 2 pharmacists) is evidentally getting your doctor to prescribe it for you. You may have already tried it without success, however, I think the key is the dosage. I did not feel any relief of symptoms until I was taking 150 mg. a day. The only side effect for me was a dry mouth.
Feel free to email me if you have any questions.
ckidson@intergate.bc.ca
Marilyn (ckidson@intergate.bc.ca)
USA - Friday, December 19, 1997 at 21:49:38 (EST)I have just found this site and its made me very happy indeed at long last
I have a name for this miserable condition.
My own problems started after a skiing trip in Italy.
Following a four hour coach trip and then flight. My symptoms began almost
immediately after touch down. I feel a rocking sensation "inside" my head
either side-to-side or back-to-front. This affects my balance and
co-ordintation I also suffer frequent head-aches and tiredness. Finally
I feel "shaky" and at times my whole body seems to vibrate as though I'm
shivering.
Prior to this I was a fit an active 26year old man. I was a league squash
player, keen skier and hill-walker. I had taken no days off work in five
years with the company. Now things are very different, I have to work hard to
maintain my balance and concentration through each day and when I get home
I quite frequently do little more than eat and go to bed.
What is interesting is that in my case the severity of the symptoms increase
and decrease over a period of weeks though they never go away all together.
The only repite I get is, curiously enough, when I'm travelling particularly
while driving I feel better.
It is also noticable that I feel worse when I'm tired and when I'm stressed.
I have spoken to numerous GPs about this problem they initially diagnosed
vertigo and then other inner ear disorders. I have been refered to a consultant
neurologist who conducted an MRI scan (negative) and an EGG (negative)
Secondly I also saw an ENT consultant whole performed "warm air" tests on my
inner ear and pronounced that to be normal.
I am currently taking pro-panonol which is a beta-blocker. This quite
sucessful in reducing the tremor sensation but does nothing for the rocking.
I am very lucky to have a supportive wife she gives me the reason to keep
fighting.
John lyle (lyleja@boat.bt.com)
Ipswich, UK - Tuesday, December 09, 1997 at 05:02:35 (EST)Thank God I found your website! I thought I was going mad. I have had this disorder for 9 years. It was treated with the scopalomine patch and valium at the time and worked beautifully until scopalomine was taken off the market. When I went to Europe 1 1/2 years ago, I had the rocking sensation for over 2 months upon my return. I was told by my doctor that nothing could be done and was ordered to have ear and neurological tests. I had no insurance at the time so I blew it off and spent 2 months in hell. You really feel disoriented. I am an antique dealer and I would chip things and drop things sometimes from the bad equilibrium. This October I went on a three hour boat ride and the rocking came back. I let it go on for about 2 1/1 weeks, it was totally maddening, so I went to the doctor again. This time I had insurance. She ordered the ear and brain tests,and gave me Meclazine which made me totally sick. I went to a chiropracter in the meantime and that didn't do any good either. In desparation I started looking on the internet, thought I would go to the Mayo Clinic or something and I found this website. I printed it and went back to the doctor and she had a real attitude and said that things like this on the internet were not accurate and "I told you to see a specialist". Yet, she wanted a copy of the website. I insisted she prescribe me some valium and at first she said "No, I hate that drug". I was very insistant so she finally prescribed me 10 2 mg pills and told me that would be the last of it. A real attitude. I am going to get another doctor. I took the valium 2 times a day. (She had told me once a day, only at bedtime, because I might have a "reaction") but I felt I needed a more frequent dosage to try and knock it out. Within 3 days of taking the valium I was 85% better. In the meantime I found my own specialist. He doesn't call it mal de debarquement, but rather a "benign vestibular disorder" which I will have the rest of my life. He prescribed me Valium stating that this is tthe best drug available for relaxing the muscle in the inner ear,and told me I should take 5 mgs up to 4 times a day, or as it is essential to feeling comfortable. He told me I must take Valium before embarking on any future journeys and Scopalomine will be coming back soon and when it does I will be given that too. I am now 100% better after only 4 more days of valium. I think there is hope for people like us. I thought I was the only person in the world that suffered from this and that is the worst feeling of all. Thank you for this website. Please share my story with others.
Sherry
USA - Friday, December 05, 1997 at 23:21:28 (EST)I haven't officially been diagnosed with MDD and I hope the symptoms don't
persist long enough for it to be necessary :)
I was on a 3 day cruise over Thanksgiving on a small ship. I noticed motion
the entire trip but never experienced seasickness onboard. I've cruised
before on large ships and had mild symptoms for a couple of days but never
anything like this.
So far, only 4 days have passed but it is impossible to concentrate, I feel
like I have a cloud inside of my head, and I wish my office would just quit
rocking for a moment!! I WORK IN A TRAVEL AGENCY!!!! I love cruising but
would really like the warm Caribbean breezes to go along with this feeling:)
Another woman in my office experienced the same thing a few years ago and
said she was comtemplating suicide before it ended 6 weeks later -- and the
doctor I went to said he had the same symptoms after a sailboat/scuba trip
where his symptoms lasted a month. The woman in my office experiences short
bouts with it since. YUCK!!!
I really don't want to stop traveling so I hope someone figures something
out soon!!
Shari (shari@comsource.net)
Evansville, IN USA - Thursday, December 04, 1997 at 11:18:41 (EST)Sorry, I mispelled the name of the drug!!!! It is amantidine. The PDR has it listed as Symmetrel.
Pat Reynolds (snappy@earthling.net)
Running Springs, CA USA - Sunday, November 23, 1997 at 15:39:31 (EST)amatidine sulfate/hydrochloride (amatidine can be attatched to either salt)
Hi Folks, If anyone tried to e-mail giaimo@juno.com and got no response.....this is me now. Problems with local server prevented me from being online.
In response to MDD being a virus: Has anyone tried amatadine sulfate? I am currently trying to convince my doctor to let me try this drug. It has been around for years. I am looking for the drug that cured a German lady in 1948 of MDD. So this drug might be a possible candidate.
Sincerely, Pat
Pat Reynolds (snappy@earthling.net)
running springs, ca USA - Sunday, November 23, 1997 at 15:35:24 (EST)I've had constant motion as walking on a dock since a cruise to Alaska in Aug of 1995. After four doctors and my own constant follow up by asking for new referrals I was finally diagnoised at the Southwestern Medical Center in Dallas. Oklahoma City docotrs of various kinds and fields never even mention MDD.
I feel they are not even aware of MDD. They kept telling me it was not caused by the cruise when I brought it up. I am fine when I am sitting down. Car trips don't help but better when I'm driving because my mind is occupied. Any motion activity makes it worse. My MDD is constant not in episodes and physical therapy didn't aid much.
My attitude is much better now that I have a name for my problem and that certainly makes life much much better.
Betty Behring (Bettyb@enid.com)
Enid, Ok USA - Wednesday, November 12, 1997 at 14:37:36 (EST)Cathy, please write to me. I would like to hear from you. I know how lonely it can be being told that you are nuts. I went through it in 88 when this happened the first time. Dont dispair you are not nuts. One question have you taken any long trips in a car or do you commute a long way to work?. I find that this is an aggravation to my MDD and has brought on more than one episode.
Nancy Tapee (NTapee@aol.com)
Oxnard, Ca USA - Wednesday, November 12, 1997 at 11:14:39 (EST)havent been diagnosed with MDD but feel I might have this.Ive been to many doctors and mayo clinic.I am now seeing a physciatrist, since everyone has advised this. I have panic and anxiety disorder which is making my balance problem worse. I dont know what caused this .Ive never been on a cruise or airplane. Ive had it since Nov.6 1996. My physciatrist says he wont help me unless I quit trying to be a doctor. he feels I shouldnt be on line trying to get help, It will just make my anxiety worse. That just made me cry terribly. I am 32 yrs. old and was a happy wife and mother of three, and now beeing told I was miserable. Why are some doctors so quick to say Im nuts!!! GOD BLESS YOU ALL!!!!!
cathy
IN USA - Friday, November 07, 1997 at 12:34:37 (EST)I tried the candles- didn't work. From what I've read, it appears that valium might stop the rocking- but only while you are on it? Anyone know?
Thanks.
Lisa Wahl (cforat@aol.com)
USA - Monday, November 03, 1997 at 15:23:17 (EST)It was only since last Monday, October 6, 1997, that a specialist informed me that I had MDD.

During the first week of August my sister and I treated our parents to a houseboat trip on Lake Powell. Though we did spend a majority of the four days on the boat, we did dock and hike, etc. During the four days I noticed no dizziness, nor did being on the boat make me sick, etc. It was not until the day after we turned in the boat that I noticed a dizzy, rocking sensation...as though I was still on the houseboat. I blew it off as just a side effect from being on the water for 4 days. We drove back to Colorado and I experienced no symptoms while driving.

For the next few weeks the dizziness remained, but only on a limited basis. Never in the morning, and it usually started up around 1:00 or 2:00 in the afternoon, and then seemed to disappear around 9:00 at night. For many years I have had neck and shoulder problems on my right side, and figured that I had strained some muscles while unbeaching the houseboat and these muscles were now pinching on some nerves, thus causing the dizziness. I went to the chiropractor which seemed to help for about an hour or two. It also appeared that moving my neck and head certain ways would either relieve or worsen the condition. The sorer my neck and shoulder area was, the worse my dizziness seemed to be.

Finally, around the beginning of September, I made an appointment with our family doctor. I had a complete physical done and at this time she told me that she believed that my problem was with my inner ear, not the shoulder or neck. The day I visted the doctor I had gone 2 full days without any dizziness. This was a first since the boat trip. However, during my physical the doctor gave me a shot of xylocaine in my back. That evening, when the medicine wore off, not only did my shoulder hurt, but the dizziness had returned with a vengeance!

For the first time since the boat trip, I woke up the next day with the symptoms. I went to work anyway and somehow survived a day or two. Finally, on a Wednesday, after sitting in front of my computer at work for 2 hours and entering about 3 words, I told my supervisor that there was something drastically wrong with me and that I could not work any more. I went home devastated, thinking I would never be able to return to work unless the dizziness left. The doctor had prescribed Meclizine, and between this and the symptoms I felt extremely tired. I began sleeping 12 to 14 hours a day. I called the doctor and told her what was happening and she worked me in that Friday. At this time she scheduled me for a Cat Scan, made an appointment for me to see a neurologist, and also made an appointment with an ear specialist here in Colorado Springs.

The Cat Scan showed nothing, the neurologist said I had an inner ear problem, and unfortunately I could not see the ear specialist until October 6...a little more than a week away.

The next Monday, after having 5 days off from work, I returned to my job and was able to survive that day. My wife was visiting the chiropractor and she suggested that we try candling my ears. Candling is an unusual process where you put this hollow tube into one's ear and burn the other end. It is suppose to remove the ear wax from deep within your ear. The candles can be purchased at most health stores and cost around $1.50 each. We had only one of the candles at home, so that night, September 29, my wife did only my right ear. As soon as she was done, I stood up and noticed that all symptoms were gone!!! I was so excited. The next night, Tuesday, we did the other ear and to this date, except for a few very brief hits (lasting about 10 seconds each), I have been fine.

I kept my appointment with the ear specialist and he immediately said that I had MDD and that I was very lucky and should never set foot on another boat again. When I mentioned the candling to him, he felt that the process does little to remove ear wax, but thought that maybe the heat or the vacuum may have triggered my ear and brain into the correct land mode.

So in respect my story has a happy ending, but after reading many of the other comments here, I am extremely frightened that the symptoms will return. I could not concentrate or do my job with the dizziness and thus a huge part of my stress is to no longer make a living and support my family if the MDD decides to revisit me.

On the brighter side, I really want to believe that this candling did cure me from the majority of the MDD effects and would like to hear if it helps anyone else. If you felt like me, you would try anything, and for under $3.00 it was one of the cheaper remedies. According to the doctor, the only problem with candling is that some people let it burn too low, thus burning themselves. Just have a bowl of water sitting by, and when the candle flame starts to get warm on the person getting candled, simply extinguish it in the water.

I would also like to know if anyone has had reoccurrences with MDD from riding amusement park rides? My family takes a trip to Disneyland every year and I am hoping not to have any problems. In the past I have always loved roller coasters and am now wondering if I should avoid them. Thanks.
Doug (trainfool@aol.com)
Colorado Springs, CO USA - Sunday, October 12, 1997 at 16:22:35 (EDT)

I also had the theory that congestion before a flight was a causal factor but now I don't think so. I become dizzy for 2-5 months after airline travel and it seemed less likely to happen if I did decongestants before landing. On my last trip, I did decongestants and tried a special ear plug that equalizes pressure. It was a very bumpy flight, with a stopover in Chicago and despite the precautions, I'm dizzy again. If I have to fly again, it will be a non-stop because the number of landings is still related. Also I have noticed that elevators can contribute to the problem- so if I have to fly somewhere and stay at a hotel, I request the lowest floor possible and I use the stairs.
Lisa Wahl (CforAT@aol.com)
Berkeley, CA USA - Sunday, October 12, 1997 at 14:20:55 (EDT)Hallo, To Marilyn and anyone who had been using the scoploamine patch: I am a friend of Evan's and work in a hospital. Last year I looked into whether any form of scopolamine was still available. The drug IS available and is used in hospitals. The pharmacy at my hospital offered to make up a patch with the drug they had for the anesthesiologists. The patch was appaerently taken off the market because of delivery problems with the patch (that is, unpredictable or uneven delivery through the skin), not because of any toxicity or problems with the drug itself. A patch "homemade" by a pharmacy would probably have the same problem. Also, it is my understanding that the use of scopolamine is not "state of the art" for this disease, but if this drug has worked for any of you, you might look into this possibility. After all, there apparently is no definitive treatment, so maybe it's best to use what works for you personally. Hope this helps. Please feel free to email me, I think I can get a "recipe" for the patch from my pharmacy.
Ramsey (ramsey@dca.net)
Philly, PA USA - Sunday, October 05, 1997 at 10:49:27 (EDT)My god am I relieved to find this website. For 30 years I have had to watch my mother suffer through intermittent bouts of 'vertigo' - variably lasting from 6weeks to 3 months. Reading your e-mails and case studies was like reliving the hell she's gone through for 30 yrs. The symptoms you aAll vestibular tests proved normal. Doctors called it psychosomatic and brought on by stress and/or depression. What a joke. It always went away on its own, and although not pleasant, my mother has always been able to cope ... until recently. Her lateset 'bout' has now lasted more than 8 months and she is experiencing the worst symptoms she has ever had. The family doesn't understand. The doctors haven't a clue. HELP, DOES ANYONE KNOW OF A DOCTOR IN CANADA, PREFERABLY IN TORONTO, WHO MIGHT KNOW A THING OR TWO ABOUT MDD? Any info is appreciated - your website itself has been a godsend - thankyou.
Laura Thomas (dlthomas@interlog.com)
Toronto, ON CANADA - Wednesday, October 01, 1997 at 11:36:43 (EDT)Hi Vijay...
The it's all just stress thing is a common diagnosis by ENT people who
are unaware of MDD. Seems when every quantitative test shows up normal, they
don't know what to do, and so just ascribe it to the catch-all of "stress".
I strongly urge you to get ahold of the papers I mention on the "Current Knowledge"
page and show them to your doctors.

With regards to the elevator, I often describe the feeling to people as being
like the acceleration/deceleration you feel at the beginning/end of a fast elevator
ride (except it's there constantly), so it doesn't surprise me that you
mention the elevator ride.

Get back to us and tell us what success you have...
Evan Torrie (torrie@etete.com)
Stanford, CA USA - Tuesday, August 26, 1997 at 14:22:53 (EDT)

Hi,
I started having this "up and down" rocking feeling about three weeks ago
after going on a turbulent plane trip and a couple of ferry rides. It
hasn't gone away since... I'm wondering if this sounds like Mal de
Debarquement. I also just started a new job where I am going up 51
floors on an elevator really quickly - I wonder if this can add to the
sensation. My ears also "pop" a lot and sometimes my neck is sore in the
area between my head and neck. Also, the back of my head sometimes has
a tingling sensation. Recently, my left hear became "clogged" after
riding up the elevator and I have difficulty "popping" it. I am convinced
that all these problems are related to an ENT problem. My general
physician thinks it's stress, but I've been under much more stress
before and felt fine. Any help and advice would be great... Thanks!!
Vijay (veej@earthlink.net)
USA - Wednesday, August 20, 1997 at 15:28:02 (EDT)I'm quite amazed to see all the folks who have the same symptoms of this
curious disease. Checking to see if this works on-line.
nora.nikcevich (nora.nikcevich@ucop.edu)
sanfrancisco, ca USA - Tuesday, August 19, 1997 at 12:09:25 (EDT)Thank goodness for this website!!! I found it by accident now I know I am not crazy.
I have had MDD on and off for seven years now. First started after a 4 day cruise.But wasn't until a few years after that , that I was diagnosed with MDD by a local ent doctor.He gave me the diagnosis in his office without any tests only my telling him my history, back then I thought he had made up the word. Over the past seven years I have had at least one episode a year, each one last 3-4 months. I did find a cure from the transderm patch of scopolamine, this worked for several years, but as of a few years ago the pharmaceutical co is not producing it anymore. I was horrified, because each time I travelled the pacth would work. My doctor since has prescribed Ativan, in January of 1998 I needed to fly to Florida, I took the Ativan and it worked, I did have MDD for a few hours after the flight , but it was very mild and in the morning it went away, I continued the Ativan during the blance of the trip. What is very discouraging is that 2 months ago after a 40 min car ride, the MDD started again. I would never have thought to take the medication for such a short car ride. (I have noticed in the past that any kind of long car ride has brought on the MDD) And of course when I do have MDD , going for a car ride is my only relief!! The up and down feeling in my head is constant, as if my head is bobbing, yet if one looked at me they could not tell. I have tried therapy , but did not help. I do notice if I am stressed the MDD is more intense and I do get alot of headaches. If I am watching TV or at a movie the MDD is still there but not as intense. Anyone that would like to e mail, I would love to hear from and will respond. Also quite ironical, I am a travel agent!! Not so funny, a travel agent that has trouble travelling!!! I send alot of clients on cruises and no one has ever complained of these after effects. Sort of never losing your"Sea Legs". I have even spoken with people from cruise lines about, I think they thought I was crazy. I even had one of my co workers ask a ship doctor about it when she sailed, he didn't know what she was talking about!! Any way, I am so glad for this web site!!! Maybe we all can make a difference.
Marilyn (MCTravel 47)
Farmington Hills, MI USA - Sunday, August 03, 1997 at 23:47:58 (EDT)While I don't have a definitive diagnosis, I feel certain that I have MDD
after disembarking from a 7-day cruise on June 23, 1997. I had severe
congestion while on-board the cruise. I have seen my primary care
physician with articles in hand. While she has referred me to an ENT for
evaluation, she believes I have correctly made my own diagnosis. I'm
grateful to the Support site & Dr. Hain's WEB page for preventing a
lengthy & frustrating evaluation period.
Foggy in GSO
USA - Thursday, July 17, 1997 at 16:59:51 (EDT)Help! I'm terrified. I've only been feeling this way since my cruise 2 weeks ago. The doctor decided I had sinusitis after an MRI, but I didn't feel comfortable with that diagnosis, so I started searching for info on the web. I ran across MDD in some article and all of my symptoms seem to fit this to a 'T'. I'm terrified at having to feel like this for years, rather than the week or two I thought it might take. I'm relatively young, 35, and can't imagine feeling this way for an extended period of time. Is there nothing that will help?
Melinda Dooley (MMS8344@dukepower.com)
Seneca, SC USA - Monday, July 14, 1997 at 14:24:34 (EDT)I have had severe and constant MDD for almost
six years. It came on in Telluride Colorado at
high altitudes. Was completely disabled for
nearly three of these years...has been a slow,
difficult, and even adaption process. Presently,
trying to work on a part time basis with some
success...have seen doctors at Mayo Clinic,
Mass Eye and Ear, Univ. of Penn., and Johns
Hopkins without any luck. I have tried
virtually every allopathic and alternative
treatment available. Presently, taking each day
as it comes. Would welcome Email. Best wishes
to all
Bob Barancik bcg@balacreates.com
Bob Barancik (bcg@balacreates.com)
Bala Cynwyd, PA USA - Tuesday, June 10, 1997 at 00:24:54 (EDT)I would like to know how many people suffered from some form of sinus congestion just before or during the cruise, airplane ride etc. I have talked to several who did. I am wondering if it is a link. let me know if you have a comment that might help.
NANCY (NTapee@aol.com)
Goleta, Ca USA - Friday, June 06, 1997 at 00:04:08 (EDT)I too apologise for errors in comment.
Karen Hennig (khennig@vnet.net)
USA - Sunday, June 01, 1997 at 15:59:30 (EDT)I am experiencing my second episode of this syndrome. 1st occured in feb. 1996 after a 7 day sail on small(42) ft boat in Virgin Islands plus two long plane rides to and from the Islands. Many tests later, my daughter foud you on internet, my primary physician prescribed Valium and 7 days later, all symtoms gone. Came back Dec. 1996 after trip to Fla via airplane. This time no relief. It seems to be getting worse. I am so grateful for this web site as I was beginning to believe I was actually going mad. Also have traveling joint pain that is worse when I am tired. Pain relieved by nasid's, but never totally gone. No evidence of arthitis, but do have ostiporosis(?)
(reduction of bone mass) Driving, or being out on small power boat makes symtoms better. Guess I"ll have to become a long distance truck driver!!
anyway, thaks for the information
Karen Hennig (khennig@vnet.net)
Mooresville, NC USA - Sunday, June 01, 1997 at 15:39:47 (EDT)Just read my submission. I apologise for the typing and incorrect grammer. First time using the WebTurbo and haven't got clue as how to use the editor. I do hope you can make out the gist of the text. We all need to notify the Vestibular Association, Maryann Rhienberger and Dr. T. Hain. Bt making our case histories avaible we can hep with research and make MDD a more known disease so we can generate research support. Thanks again, Pat Reynolds
P A Reynolds (giaimo@juno.com)
Arrowbear, CA USA - Friday, May 23, 1997 at 16:12:48 (EDT)I have had MDD since a trip to Catalina Island in April of 1993. It took almost 2 years to get it diagnosed and now there is nothing to be "done". We are all gueina pigs for medical research. Supposedly, MDD is supposed to go away all by itself after a period of time. I'm still rocking waiting. Currently I am the worst physically that I have been since the origination of symtoms in 1993. I cannot hold a job. I have all the same problems as "Fidgeity". I have been to DR. James Nelson at the Scripps Clinic in San Diego. He wants to use electric shock therapy on me, I say no dice. He is also currently conducting Virtual Reality studies. I have been in , and recomend, contact with M.A. Rhienberger. Marhein@aol.com She and I tried to create a support group a year ago. She is also in touch with Dr. Timothy Hain. My phone number is 909-867-3309. Maybe in numbers we can wake up the medical community and get some research done to help us. At least find medication to help reduce the symtoms. Thank yothank you for your time.
Pat Reynolds (giaimo@juno.com)
Arrowbnear, CA USA - Friday, May 23, 1997 at 16:02:18 (EDT)WOW, finally others who understand! Thank-you for making this site for us. I was diagnosed with MDD after going on a three day cruise to nowhere....Imagine that, going nowhere and I am still feeling the effects almost a year later. Luckily I was given a diagnosis of MDD after only 3 docs. I have still had all the tests, and gone to countless other docs just to make sure... I am an RN, and until my illness, worked with adolescent psychiatric patients. Unfortunatly, the constant dizzy feelings, disequilibrium, and balance problems have kept me from work. Now in additiont to fighting the everyday struggles of the illness, I am fighting my disability insurance company. Any of you who have tried to obtain the disability benifits you have paid for probably know that MDD is "not a disability, because it has no objective findings." I even tried to go back to work. I deluded myself into thinking I could do it, despite how miserable I felt, and the difficulties I had concentrating. Finally I had to listen when two different co-workers made comments about my gait, "you comming to work drunk again?", and others began to question where my usual boundless energy and good humor had gone. Stoping work after I was so sure I could do it was heart breaking! Another of the most frustrating aspects of the disease is its unpredictability. Sometimes I feel almost normal, in fact I find myself questioning why I am moving so oddly, because I have learned some adaptive techniques to prevent invcreases in my symptoms, and they have become habit. So, when I am feeling towards the better end of the spectrum I notice how bad I usually feel. The worst part of these better periods is that they seem to end just when I am sure they won't. I have tried in vain to find some sort of pattern. I've looked at my hormonal cycles, (only found that if I'm in a bad part of the illness it is worse), eating to much salt or caffeine, getting too little sleep,(seems I adapt to that eventually, and then I have to adapt to getting enough sleep), emotional stress (actually seems that the symptoms are less) physical stress, (again I adapt, and then have to adapt to decreased levels of activity-almost like my body thinks that after periods of stress, when I wind down it has permission to get dizzy again), etc. I have basically found that the only recognizable pattern is that just when I think things are either stabily dizzy or stabily less dizzy, they switch. I had 2 months of vestibular rehad. It helped somewhat with my "gaze stability," and with balance. So now I can look at something better, and balance better, but still feel awful. I do have a history of occular migraines, but only one period of really bad symptoms was accompanied by a long migraine headache. I have noticed that my symptoms have changed over time. I used to feel if I could just jump forward I could catch up with the rocking boat I was on. Now I feel as if the world is still but I am rocking, and actually do rock and sway on the bad days. Anyone who sees themselves here, or who just wants to share frustrations, feelings or info, feel free to e-mail me.
Beth (Gizfish@aol.com)
NY USA - Monday, May 19, 1997 at 02:52:44 (EDT)Thank God for you . I wondered if there were more of us but Gail and I didn't know how to contact any of you. I think that Gail may have introduced you to some of my symptoms. I have to add that this is not the first time I have suffered from this syndrome. The first time was in 1989, just before my father died. I was going through a terrible time because he had detriorated so dramatically that it was necessary to put him in a nursing home. We moved him there on my Birthday in April. The month before my husband and I had taken a trip to Hawaii and that is what really triggered it but I didn't know that at the time. After exhaustive testing the doctors decided that I had nothing more than depression. During the testing process my father passed away and I truly was depressed but not clinically.
Even the Phsychiatrist agreed but the Prozac seemed to help. Actually I was just getting better with time.
In l995 my daughter and I went on a long plane trip and that is what set off this latest bout. This time however, I am much worse, exhibiting outward signs of swaying that becomes so bad at times that I must use a cane and at rare times a walker to steady myself. My gait is that of a drunken sailor. I
sway when I am sitting and constantly feel the rocking. It is especially bad at night when I lay down. I joke with my children that I know when the surf is up. It helps to keep a sense of humor. I would love to hear from anyone who would like to write. Believe me I know the advantage of having an ear to bend once in a while. My ear is always listening, I won't judge or try to tell you what you should do, just listen.
Surfs up! Love and Kisses Nancy
Nancy Tapee (NTapee@aol.com)
Goleta, Ca USA - Sunday, May 18, 1997 at 17:34:50 (EDT)I forgot to write about the most difficult part of my MDD.
Going from SUPERWOMAN to less than Bright!
I was an honor student in High School (over 30 years ago), and a very capable Working Mom/Took Classes/Lots of Hobbies, Friend, Social Activities/Volunteer work/ and Member of several Organizations with lots of Involvement.
Since MDD, I have a very different life. Almost Immidiatly, I had lots of trouble spelling, I lost all math capability, and had to retire because I was an Auditing Accounts Payable Clerk for a large County in So. California.
My concentration is gone, and my short term memory stinks, I have to keep a datebook at all times, because I can't remember from one minute to the next sometimes what my plans are.
I had to buy a watch that had the day and date on it so I didn't have to ask my Husband thirty times a day what day it was, or the date.
I had to start doing crossword puzzles, and Jumbles to reeducate my brain into spelling right. I have learned to say things a lot of ways, because sometimes the word I want to spell, doesn't look right, and I cannot figure the right spelling.
I've been told we have a problem with blood levels in the brain, and to revive the flow, you should study a foreign language, music composition or mathematics. I take Spanish Conversation Class, but can only go to individual classes, because there is too much confusion at a class of 3 or 4 others. I also get too wrapped up in it, and have to take off every other semester, because after a while, my brain cannot comprehend anything new. I go one hour a week for about 12 weeks, then take the next semester off. My instructor says that about the fourth week into the class, I am remembering most of the previous class, then I start learning again. Then it gets too much, and I cannot absorb anything for a while, take off a semester and start again later.
Noise seems to come right into my head. It seems like there is a large funnel taking every noise, compounding it and sending it right into my reverberating brain. I hate the grocery store, It is like torture to do the weekly shopping. Large stores with high product shelves are also difficult.
I have learned to go at 7am or 9 pm because the screaming children and the traffic level is lower.
I make a list, keep it with me, and only go to one store. I follow the same
floorplan every time I go. One time I tried doing it in reverse, because my car was parked at the other door, and I wandered aimlessly. Had to eventually walk all the way to the other side and go the other direction.
The shelves seem to inundate me with sensory input, and I am confused
by the time I am half way down the aisle, I've forgotten what I wanted.
I am physically and emotionally exhausted by the time I finish shopping. I
am lucky there is one man in the Produce Aisle, who understands I am ill,
and always talks to me when he sees I don't look good. He is the one who
gets me from the last aisle to the Checkout. I drive people nuts behind me with my swaying, the more stressed I am the more I sway. It helps to hold on to the cart, it keeps the motion down, but I am sure a few of them think
I am drunk!
I have started buying Meat at a small meat market, Milk at the local Gas Station. The drug store has Ice Cream, drinks and candy, there are lots of fresh produce stands almost year around. My husband will do simple shopping, bread, milk, etc, but I still need to go for the stocking up process, canned juices, onions, potatoes, and daily necessities that you need on the shelf. I used to love to go to the grocery store, now I dread it, and it takes 1 1/2 hours, instead of 45 minutes to do the same thing.
I love to drive!!! It is the only time I feel like a real person. Unfortunately I still have to get out of the car, and become "Handicapped" again. It is a rude awakening.
I also love to do Genealogy, my family tree research keeps me SANE. I think because it is black and white, like a puzzle, and it is something you can see results, or have specific goals. I have a computer program to help me, because I can't remember most of the details. I carry lots of papers of printouts with me, hightlighted to see what I have to do next. I do lots of work over again, because I forgot I'd done it. I am trying to expand my brain power.
My fibromyalgia is a chronic muscle pain related to Arthritis, has to do with sleep deprivation and stress levels. If you don't sleep, your muscles, tendons and connective tissues don't revitalize them, you wake up tired, and feeling "beat up" or exhausted all day long. Naps are necessary until more normal sleep is restored. This has cleared considerably with a life style change, and stress reduction. The Arthritis Foundation has excellent resources if anyone else has this concurrently with MDD>
I am still a very busy person, I find using the computer a big help in my handicap in spelling, writing and numbers. There is the Quicken Program, which keeps my checkbook, It is different somehow, doing it on the computer, than trying to do it alone. The Right/?Left side of the brain or something like that.
Did anyone here with MDD ever have an ususual "space" attach, like a fainting with concience awareness of what is going on, but unable to connect to your body? Nancy and I have both had one, I had like a "faint", where I could feel my dog licking my face, and hear my husband talking, but was unable to move or respond.
Nancy had the same thing at work, she will have to tell you about it, but the two incidents seemed very similar when we finally each discussed it.
I think there are symptoms we don't know about, because not enough people have come together to say, "yes, I had that"--I think there is going to be some research needed now there seems to be more of us.
I better get going, I have a life too, and it is calling me. Please feel free to write me anytime. I usually will answer within a day. Hugs from California,
Gail
Gail Estok (FidgetyG@aol.com)
Santa Barbara, CA USA - Sunday, May 18, 1997 at 11:27:00 (EDT)Hi everyone, I have had MDD since 11/93, after a 7 day cruise to Mexico from So. California. Mine came on within one day of embarking on this trip, as when we stopped at the first stop, I couldn't walk straight on land and was ok on the boat. I am usually very seasick, and this time had no medications. Ate and played and had a wonderful time, so it was not a complete washout!
I have a friend who also has MDD, we also share Fibromyalgia, which stems from the stress levels I believe that our body puts on us. We also had a small spot on our MRIs, that were not "important" enough to write up, that gave us a normal MRI reading. I am wondering if anyone else had this result.
I have found a wonderful doctor who understands MDD, unfortunately he is 225 miles away from me, and I see him only once or twice a year. I have lots to share, and my friend and I have such help from each other, we have also talked about a website, as we each get lots of letters from MDD people. My story is on the 'Dizziness' Bulletin board, and I get lots of letters from people who want to touch base with another MDD person.
Will send in more comments about my symptoms, but I do have to say, that
a life style and stress reduction changes are very necessary. Also I found that cutting down on Caffeine was paramount to my alleving the major symptoms. I have the rocking and swaying, mostly when I am most tired or stressed. The worst symptom I have is the Tinnitus, which gets louder when I am tired, stressed, or having too much Iced tea.
I think this is a good Idea, and will support it 100%. There isn't anything in the world like being able to complain to someone without having to explain what you are talking about. My friend Nancy and I have had very good days because we are able to call or go out and complain to each other.
So, if anyone needs to, I am available. I sent Nancy this address this morning, I am sure you will hear from her soon.
Hugs from California, Gail Estok
Gail Estok (FidgetyG@aol.com)
Santa Barbara , CA USA - Sunday, May 18, 1997 at 10:50:02 (EDT)I have the symptoms of this condition without the trip. I feel a
rocking sensation when I'm still but I don't feel it when I'm in
motion such as walking or driving. It's like my ear doesn't know
that I've stopped moving. It's been this way for 15 months.
I've had ENG testing, ABR, hearing test and MRI. The ENG test
showed that there is activity in the left ear, other than that
all tests were normal.
Anne Grant (bagrant@gte.net)
USA - Sunday, May 11, 1997 at 18:04:17 (EDT)Great idea!
I really enjoyed the site, I've had Mdd since 1994 after a week long cruise. It's good to know that other people are getting together to help one another get through this. Will share my story later.
Charlotte Poulin
VA Beach, VA USA - Thursday, May 08, 1997 at 10:49:39 (EDT)Hi Ev.
Just thought I'd see what the page was like. Good work! I hope that this helps all the people that have MDD, and I hope that something will be found that can cure or help.
Cheers. Alys
Alys (palmer@nucleus.com)
Calgary, Canada - Wednesday, April 30, 1997 at 21:41:50 (EDT)This is the first posting to the MDD forum... hopefully the beginning of many more.
Evan
USA - Wednesday, March 19, 1997 at 21:12:28 (EST)
MDD Support Page by Evan Torrie, Copyright 1997